Elder Mistreatment and Dementia- A Comparison of People with and without Dementia across the Prevalence of Abuse
Michaela M. Rogers
Jennifer E. Storey
Sonia Galloway
SimpleOriginal

Summary

Using three years of UK helpline data, this study finds financial exploitation is more common in older adults with dementia and high care needs. Risk factors differ by dementia status, underscoring need for targeted care interventions.

2023

Elder Mistreatment and Dementia- A Comparison of People with and without Dementia across the Prevalence of Abuse

Keywords elder abuse; older adult abuse; older adult mistreatment; major neurocognitive disorder

Introduction

Globally, the increasing aging population is widely documented with projections that the world’s population aged 60 years and older will rise from 900 million (12%) in 2015 to 2 billion (22%) by 2050 (World Health Organization (WHO), 2018a). Of concern, is the prediction that elder mistreatment (or older adult mistreatment/abuse) will increase in line with population growth reaching 320 million victims worldwide by 2050 (WHO, 2018a, 2019). The World Health Organization defines elder mistreatment as:

[…] a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. This type of violence constitutes a violation of human rights and includes physical, sexual, psychological, and emotional abuse; financial and material abuse; abandonment; neglect; and serious loss of dignity and respect. (WHO, 2018a)

Currently data indicates that one in six older adults (aged 60 years and older) experience mistreatment in community settings, although research suggests that only 1 in 24 cases is reported (WHO, 2018a). Prevalence rates of mistreatment among older adults are likely to be affected by under-reporting and barriers to help-seeking (e.g., fear of consequences for self or the perpetrator) (Fraga Dominguez et al., 2019).

Population aging presents a global challenge for countries (WHO, 2018b), including an inevitable surge in people diagnosed with dementia and additional demands placed upon health and social care services. Globally, around 55 million people have dementia, with over 60% living in low- and middle-income countries and this number is expected to rise to 78 million in 2030 and 139 million in 2050 (WHO, 2022).

Dementia, also more recently termed major neurocognitive disorder in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013), is an umbrella term that describes the decline and loss of memory and other cognitive and behavioral abilities and functioning (Dementia UK, 2017). Common types include Alzheimer’s, Vascular, and Lewy Bodies. Dementia can have devastating consequences for individuals and their families including increased care needs and significant demands on caregivers (Pillemer et al., 2016).

Elder Mistreatment and Dementia

There is a growing body of literature that documents the associations between dementia and elder mistreatment (Fang & Yan, 2018; McCausland et al., 2016). Analyzing prevalence in this population is problematic since rates vary considerably, from 0.3% to 78.4% in the community and 8.3%–78.3% in institutional settings (Fang & Yan, 2018). Prevalence of elder mistreatment among individuals with dementia is, however, known to be significantly higher than for older adults without dementia (McCausland et al., 2016); although as noted earlier, prevalence estimates that rely on reported elder mistreatment are unreliable and mask the extent of the problem.

Research findings indicate a greater prevalence of psychological abuse and physical harm amongst individuals with dementia compared to other types of elder mistreatment (Cooper et al., 2009; Yan, 2014). Financial exploitation is a concern for older adults in the general population, with recent studies identifying a growth of this among people with dementia (Weissberger et al., 2019). Polyvictimization is recognized too, and is common among people with dementia (Dong et al., 2014; Wiglesworth et al., 2010).

Evidence suggests that there are multiple risk factors for all types of mistreatment among older adults including: Greater physical or cognitive impairment; chronic illness; frailty; impaired mobility; dependency; care needs; reduced capacity to undertake activities of daily living; and social isolation (Storey, 2020). Wiglesworth et al. (2010) argue that a dementia diagnosis in itself is a risk factor for elder abuse. Dependency can be a risk factor when the older adult is dependent on the abuser for financial, functional, emotional, or social support (Fang & Yan, 2018; Pillemer et al., 2016). These risk factors are associated with the individual being mistreated, but socio-ecological models have been used in several studies to examine and substantiate risk factors found at the level of the individual being abused and/or perpetrator, family, community and society (Pillemer et al., 2016; WHO, 2018b). Additionally, in scholarship highlighting relationship type as a risk factor, perpetrators are frequently family members such as an adult-children or spouse/intimate partners (Roberto, 2017).

Research examining the heterogeneity of care and safety needs is lacking; yet, for older adults these can serve to increase vulnerability to abuse (Lacher et al., 2016). This is especially the case for older people with dementia. Dementia is a progressive disease with each stage presenting different, more complex and extreme symptoms and behavior. This elevates people’s care needs, leading to heightened risk (Fang & Yan, 2018). Further, the demands of changing care needs where family members are the primary caregivers can be challenging to manage and can increase the likelihood of abusive behavior (Camden et al., 2011).

Understanding differences in mistreatment, care needs and risk factors between older adults with and without dementia is critical to an informed understanding of elder mistreatment which could enhance risk management strategies for preventing future abuse and neglect (Roberto, 2017). The current study uses a national UK dataset of reported cases of elder mistreatment to investigate those differences by comparing cases with older people reported to have dementia to those who do not. All reported cases are of alleged, not confirmed nor substantiated, mistreatment. Therefore, throughout the paper where we refer to cases of elder mistreatment, we acknowledge that all are alleged. We examine whether differences exist between elder mistreatment regarding: (1) the type of mistreatment experienced (applying the WHO definition), (2) care needs, and (3) risk factors.

Method

Study Design and Cases

Age UK is a charity working nationally and globally, to ensure that “every older person is respected, protected and treated with the dignity they deserve” (Age UK, 2018, online). Age UK operates a national information and advice line in the UK providing guidance on a range of issues including elder mistreatment. Every enquiry is logged by the advice line staff. This exploratory study examined 3 years (April 2014–March 2017) of anonymized reported incidents of alleged elder mistreatment logged by advice line staff. In total, there were 1408 reported incidents of alleged elder mistreatment, of which 299 included older people with dementia. Dementia was considered to be present where there was any evidence of dementia mentioned by the reporter either because it had been diagnosed or it was suspected (e.g., “The family believe … has been suffering with dementia for between 6 and 8 years”). A data management agreement was in place between Age UK and the researchers’ universities; ethical permission was also obtained from the latter.

Materials

Case logs were coded using a coding sheet to record evidence of mistreatment type (listed in Table 1), characteristics of the abused person, the presence or absence of care needs and risk factors (listed in Table 2). Each type of mistreatment, characteristic, and risk factor was coded as present or absent. The 10 risk factors examined were selected based on their support in Storey (2020) which reviewed 198 studies to identify empirically supported risk factors for perpetrators and victims of elder abuse. Operationalized risk factor descriptions were included in the coding sheet (see Table 2 for coded characteristics and examples of coding operationalization). For instance, the risk factor dependency on the perpetrator was considered present where there was evidence in the case log that the older person was socially, emotionally, financially, or functionally reliant on the perpetrator.

Table 1. Frequency of Polyvictimization amongst Older People with and without Dementia.

Table 1

Table 2. Presence of Care Need and Risk Factors Displayed in Frequency and Percentage for Older People with and without Dementia.

Table 2

Given the secondary nature of the data (from reported incidents to Age UK and not collected for research) some of the entries were brief in content and so did not expand beyond the indicative symptomology underpinning the dementia profile—but it was clear dementia was present/diagnosed. For the comparison cases of people without dementia, some may have been coded for cognitive decline based on an entry such as “…took M to the GP for a memory test and she has been diagnosed with short-term memory loss.” This could be the start of mild cognitive impairment or even dementia but the entries were brief and short-term memory loss could be as a result of many factors, for example, a UTI infection and therefore be temporary, but equally memory loss associated with age etc. If dementia was not stated or even suspected based on the case entry info, then they were coded as older adults without dementia.

Several steps were taken to ensure reliable coding. First, the third author, who developed the coding sheet, worked with a second rater, and discussed general coding guidance. Second, both raters coded five cases and compared them to identify any differences. As a result of this, changes were made to the coding sheet definitions to ensure variables would be coded to reflect the consensus. Third, a further 10 cases were coded and checked to ensure cases were now being reliably coded. Finally, a subsample of cases (n = 60, 10%) were coded by both raters, blind to each other’s ratings to calculate inter rater reliability. Four groupings of coded items were examined to assess reliability using intraclass correlation coefficients (ICC1), calculated using a two-way mixed effects (absolute agreement) model. All four groupings showed good to excellent agreement: mistreatment type ICC1 = .66, victim risk factors ICC1 = .74, perpetrator risk factors ICC1 = .75 and victim care needs ICC1 = .80 (Fleiss, 1986).

Data Analysis

The study employed a matched sample design wherein each case involving an older person with dementia was matched across specific criteria to a case with an older person without dementia. This design was chosen for two reasons. First, to correct for uneven sample sizes which could negatively impact analyses given that the number of people without dementia (n = 1109) was more than three times those with dementia (n = 299). Second, to control for potentially confounding variables across the two groups and ensure that differences identified were due to the presence or absence of dementia rather than the presence of these variables.

To create the matched samples a random number generator was used to identify cases within the non-dementia sample. Cases were then examined to see if they matched a case in the dementia sample, by assessing the four potentially confounding variables: (1) gender; (2) perpetrator relationship to the individual (i.e., spouse; family including adult-child, grandchild, sibling, or parent; relative including aunt, uncle, niece, nephew, cousin, and in-laws; friend/acquaintance; stranger; professional caregiver; legal professional); (3) relationship between the reporter of the alleged abuse and the person being mistreated (i.e., family, acquaintance, professional, or other); and (4) year of reported incident. Variables were identified and coded from the helpline call logs. A follow-up comparison found no significant differences on the four characteristics between people with (n = 299) and without (n = 299) dementia (p > .05), indicating the characteristics had been controlled for.

Frequency analyses were used to present descriptive case characteristics as well as the types of mistreatment present. Inferential statistics including Chi-square analyses and t-tests were used to make comparisons across the matched samples where data was dichotomous and continuous, respectively. Analyses were conducted in SPSS version 21.

Results

Case Characteristics

Alleged mistreatment was most often reported by a family member (n = 538, 90%), followed by an acquaintance or friend (n = 40, 7%), the person being mistreated (n = 8, 1%), a professional (n = 7, 1%), or another person (n = 5, 1%). Older people being mistreated were primarily female (n = 424, 71%). The mean age of individuals being mistreated was 85 years (SD = 7.46, range: 62–102); however, age was not recorded in most cases (n = 405, 68%). Perpetrators were more often male (n = 279, 47%; information was missing in n = 61 cases, 20%). Perpetrator age was missing too frequently to accurately report (n = 570, 95%). The relationship between the person being abused and perpetrator was most often parent and adult–child (n = 352, 59%), followed by spouse/partner (n = 72, 12%), other family (e.g., grandchild, sibling) (n = 87, 15%), friend/acquaintance/neighbor (n = 30, 5%), professional caregiver (n = 19, 3%), stranger (n = 15, 2.5%), other relationship (n = 13, 2%), and legal professional (n = 10, 2%).

Mistreatment Type

Polyvictimization (n = 257, 43%), which is the simultaneous presence of multiple mistreatment types, included two (n = 212, 82%), three (n = 42, 17%), or four (n = 3, 1%) types of mistreatment herein and was the most common type of alleged mistreatment. Table 1 presents the many different combinations of alleged mistreatment types reported. Financial exploitation (n = 255, 43%) was the next most common single type of alleged mistreatment followed by psychological abuse (n = 69, 12%), physical abuse (n = 10, 2%), sexual abuse (n = 3, 1%), and neglect (n = 4, 1%). Sample sizes were large enough for polyvictimization, financial exploitation, and psychological abuse to allow for comparisons between older people with and without dementia. Financial exploitation was significantly more common among adults with dementia (n = 140, 47%) compared to those without (n = 115, 39%), (X2 (1, N = 598) = 4.27, p = .04, φ = .09), whereas polyvictimization and psychological abuse did not vary significantly.

Care Needs and Risk Factors

The frequency of care needs and risk factors across the two samples are displayed in Table 2. In terms of care needs, older people with dementia were significantly more dependent on others for their care needs than those without dementia (X2 (1, N = 598) = 14.43, p < .001, φ = .16). Older adults with dementia were also significantly more likely to require daily care than those without (X2 (1, N = 598) = 11.83, p = .001, φ = .14).

With respect to victim risk factors, older adults without dementia (M = .61, SD .82) had more physical health risk factors than those with dementia (M = .49, SD = .74), t (596) = 1.99, p = .05, d = .15. Older people with dementia (M = 1.28, SD = .50) had more experiences of depression and cognitive functioning risk factors than those without dementia (M = .40, SD = .62), t (596) = 19.19, p < .000, d = 1.56. Given the confounding role that dementia would play in comparisons of mental health and cognitive functioning, each risk factor in this category was examined separately. Cognitive decline was significantly more common among people with dementia (X2 (1, N = 598) = 399.81, p < .001, φ = .82) as was a lack of mental capacity (X2 (1, N = 441) = 13.06, p < .001, φ = .17). The presence of depression and combative/aggressive behavior did not differ between people with and without dementia. Older adults with dementia (M = 1.47, SD = 1.38) were dependent on the perpetrator in more ways than those without dementia (M = 1.14, SD = 1.31), t (596) = 3.03, p = .003, d = .25. Older adults without dementia (M = .40, SD = .91) had more problematic attitudes toward the perpetrator than those with dementia (M = .20, SD = .66), t (596) = 3.08, p = .002, d = .25. Older people without dementia (M = .19, SD = .58) had experienced more types of historical victimization than those with dementia (M = .08, SD = .42), t (596) = 2.42, p = .016, d = .21. Risk factors that showed no difference between the samples were fear/shame and ineffective stress and coping. The presence of substance abuse in people who have been mistreated was too low to analyze statistically.

Discussion

The results of our exploratory study support previous research showing that older adults diagnosed with dementia are at an elevated risk of elder mistreatment (McCausland et al., 2016; Wiglesworth et al., 2010). Our results indicate that older adults with dementia are considerably overrepresented in our sample, at 22%, compared to the estimated 7% of older people with dementia in the UK population. Accounting for this overrepresentation is problematic without further information. Despite this, the finding that older adults with dementia were overrepresented in our sample and showed elevated rates of particular risk factors for mistreatment, may therefore indicate that older adults with dementia in our study have increased vulnerability and need targeted support.

Differences found across older people with and without dementia related to types of alleged mistreatment experienced, care needs, and risk factors. These differences suggest that older people with dementia were: more likely to experience financial exploitation; more dependent on others for their care needs; significantly more likely to require daily care; had more cognitive decline; and were more likely to lack capacity. In contrast, those without dementia had: more physical health risk factors; more problematic attitudes toward the perpetrator (specifically, normalizing or denying abuse); and experienced more types of historical victimization. It is not possible to make further claims about these findings without further contextual detail across both samples.

Our results were different from existing studies that indicate a greater prevalence of psychological abuse and physical harm amongst older adults with dementia compared to other types of elder mistreatment (Cooper et al., 2009; Yan, 2014). However, our finding that older adults with dementia were more likely to be victims of financial exploitation is consistent with recent research that shows a growth in financial exploitation for older people in general and, importantly, for those with dementia (Peisah et al., 2016). A recent study compared abuse across age groups revealing that some forms of mistreatment remained stable with age (e.g., controlling behavior) while financial exploitation is highest among women aged 65 and older (Stöckl & Penhale, 2015).

Our study found that polyvictimization was common for older people both with dementia and without dementia. This contrasts with other research which suggests that people with dementia experience higher rates of polyvictimization (Dong et al., 2014; Roberto, 2017). We examined a national, representative sample which was selected from sequential enquiries made over a three-year period. As a large proportion of the total sample alleged polyvictimization, it is salient that anyone screening for or taking reports of elder mistreatment habitually probes for polyvictimization to ensure meticulous, accurate identification, and reporting of abuse to facilitate appropriate supports. Another important finding is that neglect was found in combination with at least one other type of abuse in 9 of the 14 combinations we recorded (see Table 1). This also suggests future research on polyvictimization is needed.

The comparison of risk factors revealed important differences across both sub-groups. Older people without dementia had more physical health problems (chronic illness, impaired mobility, malnourishment) than individuals with dementia, yet, people with dementia had significantly more mental health conditions (depression) and cognitive problems (including and excluding dementia). Peisah et al. (2016) also found that a lack of capacity is an important risk factor in an analysis of elder abuse type and that the lack of financial competency amongst persons with cognitive impairment elevates the risk of financial exploitation through, for example, the misuse of power of attorney (a legal arrangement that allows someone to make decisions for another, or act on their behalf, if they are no longer able or wish to make their own decisions). Older adults without dementia had more problematic attitudes towards the perpetrator and prior victimization.

We found no significant differences across risk factors relating to ineffective or poor coping, experiences of fear or shame, or social care involvement, between people with and without dementia. We also found no difference in relation to the presence of combative/aggressive behavior which was surprising as this may co-occur with dementia. Numbers in this category were small so this needs to be explored in future research. Additionally, this lack of difference may reflect the true state of affairs or the limited information recorded in the case entries. Subsequently, it is clear that professionals involved in taking initial referrals or advice-giving should be trained and prompted to solicit and record more detailed information relating to empirically supported risk and need factors (see Implications for health and social care professionals below).

In relation to levels of dependency in older people with dementia, the results indicated a greater need for assistance or oversight of financial management, social interactions, and functional tasks such as daily care or transportation. Dependency in relation to these functional tasks is an important risk factor for abuse among persons with dementia. Additionally, dependency impedes help-seeking as older people may fear the loss of care and family/social contact. People with dementia were also significantly more dependent on others for their needs and this included the requirement for daily care. This suggests that the potential for financial exploitation is greater due to increased contact with carers and more frequent opportunities (also found by Lacher et al., 2016).

Despite limited perpetrator information, there was a clear indication that the majority of victims were female (71%) and perpetrators were mostly male adult children (59%) suggesting that elder mistreatment is gendered. This reflects existing studies (Roberto, 2017; Rogers & Storey, 2019). This is an important point as whilst a feminist lens is often used to examine violence against women and girls, a gender-based analysis of elder mistreatment is often lacking (Weeks et al., 2018). There are, however, studies that show more male victimhood and that males report abuse less. Therefore, there is a need for rigorous future research examining elder mistreatment using a gender-based analysis to advance understanding as to whether elder mistreatment is gendered across different subtypes of elder mistreatment and across specific contexts.

Implications for Health and Social Care Professionals

The results have implications for the health and social care professionals providing care to older adults living with dementia in terms of the identification, assessment, and management of mistreatment. As individuals with dementia had more mental health and cognitive health risk factors (and abuse can cause/exacerbate mental and physical ill health), there can be a greater need for health and social care, particularly when there is an inevitable progression of dementia. Given the health needs of people with dementia and likelihood of regular contact with health professionals, Lazenbatt et al. (2013) argue that healthcare practitioners, in particular, are in a unique position to identify mistreatment and signpost victims and families to support. As such, health professionals working in the field of dementia care should be trained in the use of screening tools to enable them to recognize the signs and symptoms of various forms of elder mistreatment. Available screening tools (such as those developed by the National Initiative for the Care of the Elderly, https://www.nicenet.ca/tools) can be adopted into such training.

Improved awareness and recognition of elder mistreatment among health and social care professionals should lead to increased identification and reporting of abuse with timely and appropriate intervention, such as safety planning or advocacy. A recognition of the dynamic nature of risk relative to the progressive nature of dementia should be reflected in assessments and interventions. For example, planned case reviews should reassess risk and need accounting for the progressive nature of dementia, the deterioration of health and wellbeing and the increased likelihood of formal and/or informal caregiver involvement, along with increased vulnerability and risk of mistreatment. If relevant in the case of health or social care professionals without a safeguarding remit, a referral should be made to a safeguarding professional who can implement appropriate management strategies.

Awareness training for all health and social care professionals should draw attention to research, such as the current study, which indicates that adult-children are the primary perpetrators of mistreatment, and that when abuse is perpetrated by adult-children, parents are highly reluctant to report abuse for a number of reasons such as love, shame, or embarrassment (Roberto, 2017). This will enable professionals to embed evidence-informed practice in assessment, professional judgment, decision-making, and interventions.

To safeguard people at the point of a dementia diagnosis, ideally, two processes should take place. First, is the assessment of risk factors for elder mistreatment possessed by older adults with dementia by the health or social care professional with some consideration of the potential presence or risk of abuse. Safeguarding conversations should involve the older adult to support autonomous choice as much as possible and to improve quality of life, wellbeing, and safety. Positioning people as experts in their own lives and working in partnership enables them to reach better resolution or management of their circumstances (Crockett et al., 2018); for example, by including them in decision-making and safety planning.

Second, in cases of identified abuse, an intervention strategy should consider levels of dependency on the perpetrator and seek to source replacement support where appropriate. At the point of reporting, older people should be made aware that their best interests and safety will be prioritized and this may mean sourcing alternative support where the perpetrator is the primary caregiver. Implementing prevention or early help measures, supporting those with caring responsibilities to develop effective coping strategies to reduce and relieve caregiver burden and anxiety could improve outcomes or avoid mistreatment altogether (Pillemer et al., 2016).

Our results show intervention may be needed for both older adults with and without dementia in relation to the need of daily care. When considering the role and contribution of informal (unpaid) caregiving, a critical stance is needed towards some of the more contested, hackneyed theories, such as caregiver stress, particularly as research on caregiver stress reports divergent findings. A study conducted by Özcan et al. (2017) found that abuse in situations of informal caregiving was often bidirectional in that those caregivers who were being mistreated were more likely to also perpetrate abuse. Additional types of intervention could support individuals who are reluctant to cut ties with their caregiver despite this person being the source of mistreatment. Processes of normalizing or denying mistreatment, in this case, may result as people may be less likely to separate from the perpetrator, seek help, or accept assistance. Research to improve understanding of these complex barriers to help is needed as it could inform targeted and more effective interventions.

Finally, in case management for those people with dementia, intervention might include the removal of the individual from the abusive setting, while it can cause distress and confusion, safeguarding them might be the priority to ensure their safety and wellbeing. If no significant and immediate risks are identified, to encourage continued help-seeking, a safety plan might identify community-based support and resources that are available to meet the person’s needs, such as specialist older persons or domestic violence services. Further, a victim-centered, rights-based approach to case management, where the older adult is included as much as possible in the decisions made in their case, could help to alleviate that distress and confusion (Crockett et al., 2018).

Limitations

One limitation of our study is the issue of ambiguous, missing, or incomplete data in secondary data. Call-takers did not routinely record victim age but when they did ask, people were within the appropriate age range. Where callers described the older adult as having dementia, this does not necessarily mean that the person did actually have dementia. It is not known if call-takers recorded a dementia diagnosis for the person of concern, and then, in some cases, asked no further question regarding health needs and, as a result, additional data on co-occurring physical and mental health needs went unrecorded. All the cases included in the sample were recorded by call-takers as cases of alleged elder mistreatment. It is possible that false positives and negatives occur, and in the case of the latter there may be important differences in cases of mistreatment that go unreported.

Individuals with mid to advanced dementia would be less capable to reporting mistreatment than those without dementia and if they did, may be less able to provide information on the risk factors collected. It is important to note, however, that adults in the early stages are still able to report. This could mean that both mistreatment and risk factors among people with dementia were underreported here. However, this under-reporting may be somewhat mitigated by the fact that one UK study found that 88% of mistreatment reports to a helpline are made by someone other than the victim (Fraga Dominguez et al., 2022).

Our study was unable to undertake an in-depth analysis of carer or perpetrator traits and behavior. Our focus on victims of elder mistreatment, rather than perpetrators, reflects the sample provided by Age UK as there was little information provided about perpetrators in the case entries given the focus on supporting the mistreated older person and/or reporter. Ostensibly, the focus on victims would seem appropriate given the charity’s aim to provide support to older adults experiencing mistreatment. However, recent research shows that implementing risk management strategies focused on the perpetrator such as physical treatment, social support, and communication most commonly resulted in positive case outcomes (Storey et al., 2021). This suggests that collecting and suggesting support/interventions for perpetrators could be a beneficial addition to the charity’s current practice.

Finally, some of the subsamples (reported in Table 2) were small and we were unable to make comparisons and therefore only did make comparison where statistically appropriate. We therefore adopted caution in making conclusions.

Conclusion

Elder mistreatment is a global public health concern and existing empirical evidence demonstrates heightened risk of mistreatment for older adults with a dementia diagnosis (McCausland, et al., 2016;Wiglesworth et al., 2010). This is concerning in light of increasing rates of dementia. In particular, it is clear that when experiencing abuse, older people with dementia are particularly vulnerable to financial exploitation and polyvictimization. The latter warrants further rigorous investigation to advance understanding about polyvictimization for older adults with dementia, or a comparison of those with and without dementia. Future scholarship should also examine mistreatment amongst adults under age 65 with early onset dementia as this population is currently neglected in research.

The results of our study suggested two victim profiles. Older people with dementia suffered from more mental health and cognitive problems and had higher care needs while those without dementia presented with specific risks and needs related to physical health, attitudes, and prior victimization. This greater understanding of the specific elder abuse risk factors for older adults with and without dementia, could contribute to identifying victims and those at risk, including at specific stages of contact with the medical system, as well as reducing risk through the mitigation of risk factors (Peisah et al., 2016; Storey, 2020). The results suggest specific educational pathways for health and social care professionals caring for older adults suffering from dementia as well as specific intervention targets for safeguarding professionals dealing with older people without dementia.

The dearth of existing research draws attention to the knowledge gaps within elder mistreatment case management. The direction of future research needs to enhance understanding about the types of abuse amongst older adults with dementia to inform case management amongst health and social care professionals whose remit may include the detection and prevention of abuse or risk. This would benefit from evaluation to understand the efficacy of education for professionals. In addition, research exploring perpetrator data to analyze risk factors would also enhance case management. Finally, enhancing knowledge of mistreatment types across multi-agency networks of professions who support older people with dementia is key to an effective case management in the future.

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Introduction

The global population aged 60 years and older is increasing. Projections suggest this group will rise significantly from 900 million in 2015 to 2 billion by 2050. A related concern is the expected rise in elder mistreatment, which could affect 320 million individuals worldwide by 2050. Elder mistreatment is defined as any single or repeated act, or lack of proper action, within a trusted relationship that causes harm or distress to an older person. This includes various forms of abuse such as physical, sexual, psychological, emotional, financial, and material abuse, as well as abandonment, neglect, and a serious loss of dignity and respect.

Currently, data indicates that one in six older adults (60 years and older) experience mistreatment in community settings. However, research suggests that only about 1 in 24 cases is reported. This low reporting rate is likely due to factors like fear of consequences for the older person or the abuser, which creates barriers to seeking help.

Population aging presents a global challenge for many countries. This includes an expected increase in people diagnosed with dementia and greater demands on health and social care services. Globally, about 55 million people currently live with dementia, with over 60% residing in low- and middle-income countries. This number is projected to rise to 78 million by 2030 and 139 million by 2050.

Dementia, also known as major neurocognitive disorder, is a general term describing the decline and loss of memory and other mental and behavioral abilities. Common types include Alzheimer’s disease, Vascular dementia, and Lewy Body dementia. Dementia can have severe effects on individuals and their families, leading to increased care needs and significant demands on caregivers.

Elder Mistreatment and Dementia

A growing body of research shows a connection between dementia and elder mistreatment. Determining the exact rates of mistreatment in this group is challenging, with reported figures varying widely. However, it is known that the prevalence of elder mistreatment among individuals with dementia is significantly higher than for older adults without dementia. It is important to remember that prevalence estimates based on reported cases are often unreliable and do not show the full extent of the problem.

Research indicates that psychological abuse and physical harm are more common among individuals with dementia compared to other types of elder mistreatment. Financial exploitation is a concern for older adults in general, and recent studies show this type of abuse is increasing among people with dementia. Experiencing multiple types of mistreatment, known as polyvictimization, is also common among people with dementia.

Evidence suggests there are many risk factors for all types of mistreatment among older adults. These include: greater physical or mental decline; chronic illness; frailty; difficulty moving; dependence on others; significant care needs; reduced ability to perform daily activities; and social isolation. A dementia diagnosis itself is considered a risk factor for elder abuse. Dependency can be a risk factor when an older adult relies on the abuser for financial, functional, emotional, or social support. While these risk factors relate to the individual being mistreated, studies also examine factors at the level of the abuser, family, community, and society. Often, perpetrators are family members, such as adult children or spouses.

There is a lack of research examining the diverse care and safety needs of older adults, which can increase their vulnerability to abuse. This is particularly true for older people with dementia. Dementia is a progressive disease, meaning each stage presents different, more complex, and extreme symptoms and behaviors. This increases individuals’ care needs and heightens their risk of abuse. Additionally, the demands of changing care needs, especially when family members are primary caregivers, can be difficult to manage and may increase the likelihood of abusive behavior.

Understanding the differences in mistreatment, care needs, and risk factors between older adults with and without dementia is essential for a comprehensive understanding of elder mistreatment. This knowledge could improve strategies for preventing future abuse and neglect. The current study uses a national UK dataset of reported cases of elder mistreatment to investigate these differences by comparing cases of older people reported to have dementia with those who do not. It is important to note that all reported cases are of alleged, not confirmed or proven, mistreatment. The study examines whether differences exist regarding: (1) the type of mistreatment experienced, (2) care needs, and (3) risk factors.

Study Design and Cases

Age UK is a charity that works to ensure all older people are treated with dignity and respect. The charity operates a national information and advice line in the UK, offering guidance on various issues, including elder mistreatment. Every inquiry is recorded by the advice line staff. This exploratory study analyzed three years (April 2014–March 2017) of anonymized records of alleged elder mistreatment logged by advice line staff.

In total, there were 1408 reported incidents of alleged elder mistreatment. Of these, 299 involved older people with dementia. Dementia was considered present if there was any mention of it by the person reporting, either as a diagnosis or suspicion. For example, "The family believe ... has been suffering with dementia for between 6 and 8 years." A data management agreement was in place between Age UK and the researchers’ universities, and ethical approval was obtained.

Materials

Case logs were coded using a coding sheet to record the type of mistreatment, characteristics of the abused person, and the presence or absence of care needs and risk factors. Each item was coded as present or absent. Ten risk factors were chosen based on a review of 198 studies that identified empirically supported risk factors for perpetrators and victims of elder abuse. The coding sheet provided clear descriptions for each risk factor. For example, "dependency on the perpetrator" was considered present if the older person relied on the perpetrator for social, emotional, financial, or functional support.

Given that the data was secondary (from reports to Age UK, not collected for research), some entries were brief and did not provide extensive detail beyond indicating dementia. For comparison, cases of people without dementia might have been coded for cognitive decline if, for example, an entry stated, "…took M to the GP for a memory test and she has been diagnosed with short-term memory loss." This could indicate early cognitive impairment or dementia, but due to brevity, it was not assumed to be dementia unless explicitly stated or strongly suspected.

Several steps were taken to ensure reliable coding. First, the coding sheet developer worked with a second coder to discuss general coding guidelines. Second, both coders reviewed five cases together to identify differences and refine coding definitions for consistency. Third, an additional 10 cases were coded and checked to ensure reliable coding. Finally, a subset of cases (n = 60, 10%) were coded independently by both coders to calculate inter-rater reliability. Reliability was assessed for four groups of coded items and showed good to excellent agreement.

Data Analysis

The study used a matched sample design, where each case involving an older person with dementia was matched to a case involving an older person without dementia based on specific criteria. This design was chosen for two reasons. First, it corrected for uneven sample sizes, as the number of people without dementia (n = 1109) was more than three times those with dementia (n = 299). Second, it helped control for potentially confusing variables, ensuring that identified differences were due to the presence or absence of dementia rather than these other factors.

To create the matched samples, a random number generator selected cases from the non-dementia group. These cases were then matched to those in the dementia sample based on four potentially confusing variables: (1) gender; (2) the perpetrator’s relationship to the individual (e.g., spouse, adult child, professional caregiver); (3) the relationship between the person reporting the alleged abuse and the person being mistreated (e.g., family, professional); and (4) the year the incident was reported. A follow-up comparison confirmed no significant differences in these four characteristics between the matched groups (n = 299 with dementia, n = 299 without dementia), indicating successful control of these variables.

Frequency analyses were used to describe case characteristics and types of mistreatment. Statistical tests, including Chi-square analyses and t-tests, were used to compare the matched samples for dichotomous (yes/no) and continuous data, respectively. All analyses were conducted using SPSS version 21.

Case Characteristics

Alleged mistreatment was most frequently reported by a family member (90%), followed by an acquaintance or friend (7%). The person being mistreated themselves reported 1% of cases, professionals reported 1%, and others reported 1%. The older people being mistreated were primarily female (71%). The average age of individuals being mistreated was 85 years, though age was not recorded for most cases (68%). Perpetrators were more often male (47%), with missing information in 20% of cases. Perpetrator age was too frequently missing to be accurately reported (95%). The relationship between the abused person and perpetrator was most often parent and adult child (59%), followed by spouse/partner (12%), other family (15%), friend/acquaintance/neighbor (5%), professional caregiver (3%), stranger (2.5%), other relationship (2%), and legal professional (2%).

Mistreatment Type

Polyvictimization, which involves the simultaneous presence of multiple mistreatment types, was the most common type of alleged mistreatment (43%). This included two (82%), three (17%), or four (1%) types of mistreatment. Financial exploitation was the next most common single type of alleged mistreatment (43%), followed by psychological abuse (12%), physical abuse (2%), sexual abuse (1%), and neglect (1%). Sample sizes were large enough for polyvictimization, financial exploitation, and psychological abuse to allow for comparisons between older people with and without dementia. Financial exploitation was significantly more common among adults with dementia (47%) compared to those without (39%), while polyvictimization and psychological abuse did not show significant differences.

Care Needs and Risk Factors

Regarding care needs, older people with dementia were significantly more dependent on others for their care than those without dementia. Older adults with dementia were also significantly more likely to require daily care.

Concerning victim risk factors, older adults without dementia had more physical health risk factors compared to those with dementia. However, older people with dementia had more experiences of depression and cognitive functioning risk factors than those without dementia. Given the role dementia plays in comparisons of mental health and cognitive functioning, each risk factor in this category was examined separately. Cognitive decline was significantly more common among people with dementia, as was a lack of mental capacity. The presence of depression and combative or aggressive behavior did not differ between people with and without dementia. Older adults with dementia were dependent on the perpetrator in more ways than those without dementia. Conversely, older adults without dementia showed more problematic attitudes toward the perpetrator and had experienced more types of historical victimization. Risk factors that showed no difference between the samples were fear or shame and ineffective stress and coping. The presence of substance use in mistreated individuals was too low for statistical analysis.

Discussion

The findings of this exploratory study support previous research indicating that older adults diagnosed with dementia face a heightened risk of elder mistreatment. The results show that older adults with dementia were considerably overrepresented in the study's sample (22%), compared to the estimated 7% of older people with dementia in the UK population. While the reason for this overrepresentation is not fully clear, the finding that older adults with dementia were overrepresented and showed elevated rates of specific risk factors for mistreatment suggests increased vulnerability and a need for targeted support for this group.

Differences were found between older people with and without dementia concerning the types of alleged mistreatment experienced, care needs, and risk factors. These differences suggest that older people with dementia were more likely to experience financial exploitation, were more dependent on others for their care, were significantly more likely to require daily care, had more cognitive decline, and were more likely to lack mental capacity. In contrast, those without dementia had more physical health risk factors, exhibited more problematic attitudes toward the perpetrator (such as normalizing or denying abuse), and had experienced more types of historical victimization. It is not possible to draw further conclusions about these findings without more specific contextual details for both groups.

The results differed from existing studies that often indicate a greater prevalence of psychological abuse and physical harm among older adults with dementia. However, the finding that older adults with dementia were more likely to be victims of financial exploitation aligns with recent research showing an increase in financial exploitation for older people in general, and importantly, for those with dementia. A recent study revealed that while some forms of mistreatment remained stable with age, financial exploitation was highest among women aged 65 and older.

This study found that polyvictimization was common for older people both with and without dementia. This contrasts with other research that suggests people with dementia experience higher rates of polyvictimization. The current study examined a national, representative sample from sequential inquiries over three years. Since a large proportion of the total sample alleged polyvictimization, it is crucial for anyone screening for or receiving reports of elder mistreatment to consistently probe for polyvictimization. This ensures accurate identification and reporting of abuse, facilitating appropriate support. Another important finding was that neglect occurred in combination with at least one other type of abuse in 9 out of 14 recorded combinations. This suggests a need for future research on polyvictimization.

The comparison of risk factors revealed important differences between the two subgroups. Older people without dementia had more physical health problems (such as chronic illness, impaired mobility, malnutrition) than individuals with dementia. However, people with dementia had significantly more mental health conditions (depression) and cognitive problems (including and excluding dementia). A lack of capacity is an important risk factor in elder abuse, and the lack of financial competency among individuals with cognitive impairment increases the risk of financial exploitation, for example, through the misuse of power of attorney. Older adults without dementia showed more problematic attitudes toward the perpetrator and had a history of more prior victimization.

No significant differences were found across risk factors related to ineffective coping, experiences of fear or shame, or social care involvement between people with and without dementia. Also, there was no difference in the presence of combative or aggressive behavior, which was surprising given its potential co-occurrence with dementia. The numbers in this category were small, so further exploration is needed. This lack of difference might reflect the actual situation or simply limited information in the case entries. Therefore, it is clear that professionals involved in initial referrals or advice-giving should be trained and prompted to gather and record more detailed information about empirically supported risk and need factors.

Regarding levels of dependency in older people with dementia, the results indicated a greater need for assistance or oversight in financial management, social interactions, and daily functional tasks like personal care or transportation. Dependency in these functional tasks is a significant risk factor for abuse among individuals with dementia. Additionally, dependency hinders help-seeking, as older people may fear losing care and family or social contact. People with dementia were also significantly more dependent on others for their needs, including the requirement for daily care. This suggests a greater potential for financial exploitation due to increased contact with caregivers and more frequent opportunities for abuse.

Despite limited information on perpetrators, there was a clear indication that most victims were female (71%) and perpetrators were mostly male adult children (59%), suggesting that elder mistreatment is often influenced by gender. This aligns with existing studies. This is an important point because while a feminist perspective is often used to examine violence against women and girls, a gender-based analysis of elder mistreatment is often lacking. However, some studies show more male victimhood and that males report abuse less often. Therefore, rigorous future research examining elder mistreatment with a gender-based analysis is needed to understand if it is gendered across different types of mistreatment and specific contexts.

Implications for Health and Social Care Professionals

The study's findings have implications for health and social care professionals who provide care to older adults living with dementia, particularly concerning the identification, assessment, and management of mistreatment. Since individuals with dementia had more mental health and cognitive health risk factors, and abuse can cause or worsen mental and physical ill health, there can be a greater need for health and social care, especially as dementia progresses. Given the health needs of people with dementia and their likely regular contact with health professionals, healthcare practitioners are in a unique position to identify mistreatment and guide victims and families to support. As such, health professionals working in dementia care should receive training in using screening tools to recognize the signs and symptoms of various forms of elder mistreatment. Available screening tools can be integrated into such training.

Improved awareness and recognition of elder mistreatment among health and social care professionals should lead to increased identification and reporting of abuse, resulting in timely and appropriate intervention, such as safety planning or advocacy. A recognition of the dynamic nature of risk, relative to the progressive nature of dementia, should be reflected in assessments and interventions. For instance, planned case reviews should reassess risk and needs, considering the progressive nature of dementia, the decline in health and well-being, and the increased likelihood of formal or informal caregiver involvement, along with increased vulnerability and risk of mistreatment. If applicable for health or social care professionals without a safeguarding role, a referral should be made to a safeguarding professional who can implement appropriate management strategies.

Training for all health and social care professionals should highlight research, such as this study, which indicates that adult children are often the primary perpetrators of mistreatment. When abuse is perpetrated by adult children, parents are often highly reluctant to report it due to reasons such as love, shame, or embarrassment. This awareness will enable professionals to integrate evidence-informed practices into assessment, professional judgment, decision-making, and interventions.

To protect people at the point of a dementia diagnosis, ideally, two processes should occur. First, the health or social care professional should assess risk factors for elder mistreatment in older adults with dementia, considering the potential presence or risk of abuse. Safeguarding discussions should involve the older adult as much as possible to support their autonomous choice and improve their quality of life, well-being, and safety. Involving individuals as experts in their own lives and working collaboratively empowers them to achieve better resolution or management of their circumstances, for example, by including them in decision-making and safety planning.

Second, in identified abuse cases, an intervention strategy should consider the older adult’s level of dependency on the perpetrator and aim to find replacement support where appropriate. At the point of reporting, older people should be informed that their best interests and safety will be prioritized, which may mean finding alternative support if the perpetrator is the primary caregiver. Implementing prevention or early help measures, and supporting those with caring responsibilities to develop effective coping strategies to reduce caregiver burden and anxiety, could improve outcomes or prevent mistreatment entirely. Interventions may also be needed for both older adults with and without dementia regarding the need for daily care. When considering the role of informal (unpaid) caregiving, a critical perspective is needed toward theories like caregiver stress, especially since research on caregiver stress reports differing findings. Some studies have found that abuse in informal caregiving situations is often bidirectional, meaning caregivers who are being mistreated are also more likely to perpetrate abuse. Additional interventions could support individuals who are reluctant to end ties with their caregiver despite this person being the source of mistreatment. Processes of normalizing or denying mistreatment, in this context, may result in people being less likely to separate from the perpetrator, seek help, or accept assistance. Research to improve understanding of these complex barriers to help is needed, as it could inform targeted and more effective interventions.

Finally, in case management for people with dementia, intervention might include removing the individual from an abusive environment. While this can cause distress and confusion, safeguarding their safety and well-being should be the priority. If no significant and immediate risks are identified, to encourage continued help-seeking, a safety plan might identify community-based support and resources available to meet the person’s needs, such as specialist services for older persons or domestic violence. Furthermore, a victim-centered, rights-based approach to case management, where the older adult is included as much as possible in decisions made in their case, could help to alleviate distress and confusion.

Limitations

One limitation of this study is the issue of ambiguous, missing, or incomplete data in secondary sources. Call-takers did not routinely record the victim's age, but when they did ask, individuals were within the appropriate age range. When callers described an older adult as having dementia, it does not necessarily mean the person had a formal diagnosis. It is unknown if call-takers recorded a dementia diagnosis but then did not ask further questions about health needs, leading to unrecorded additional data on co-occurring physical and mental health needs. All cases in the sample were recorded by call-takers as alleged elder mistreatment. It is possible that both false positives and negatives occur, and for the latter, there may be important differences in cases of mistreatment that go unreported.

Individuals with moderate to advanced dementia would be less able to report mistreatment than those without dementia, and if they did, they might be less able to provide information on the risk factors collected. However, it is important to note that adults in the early stages of dementia are often still able to report. This could mean that both mistreatment and risk factors among people with dementia were underreported in this study. However, this under-reporting may be somewhat lessened by the fact that one UK study found that 88% of mistreatment reports to a helpline are made by someone other than the victim.

This study was unable to conduct an in-depth analysis of caregiver or perpetrator traits and behavior. The focus on victims of elder mistreatment, rather than perpetrators, reflects the sample provided by Age UK, as there was limited information about perpetrators in the case entries given the emphasis on supporting the mistreated older person or reporter. While focusing on victims seems appropriate given the charity's aim to support older adults experiencing mistreatment, recent research shows that implementing risk management strategies focused on the perpetrator (e.g., physical treatment, social support, communication) most commonly resulted in positive case outcomes. This suggests that collecting data on and suggesting support or interventions for perpetrators could be a beneficial addition to the charity’s current practice.

Finally, some of the analyzed subsamples were small, which limited the ability to make comparisons. Conclusions were drawn with caution where statistical analysis was appropriate.

Conclusion

Elder mistreatment is a global public health concern, and existing evidence shows a heightened risk of mistreatment for older adults diagnosed with dementia. This is particularly concerning given the increasing rates of dementia worldwide. Specifically, it is clear that older people with dementia are especially vulnerable to financial exploitation and polyvictimization when experiencing abuse. Polyvictimization warrants further rigorous investigation to enhance understanding for older adults with dementia, or for comparison between those with and without dementia. Future research should also examine mistreatment among adults under age 65 with early-onset dementia, as this population is currently overlooked in research.

The study’s results suggest two victim profiles. Older people with dementia suffered from more mental health and cognitive problems and had higher care needs. In contrast, those without dementia presented with specific risks and needs related to physical health, attitudes, and previous victimization. This improved understanding of specific elder abuse risk factors for older adults with and without dementia could help identify victims and those at risk, including at specific stages of contact with the medical system, as well as reduce risk through mitigation of risk factors. The results suggest specific educational pathways for health and social care professionals caring for older adults with dementia, as well as specific intervention targets for safeguarding professionals dealing with older people without dementia.

The lack of existing research highlights knowledge gaps in elder mistreatment case management. The direction of future research needs to improve understanding of abuse types among older adults with dementia to inform case management among health and social care professionals whose responsibilities may include detecting and preventing abuse or risk. This would benefit from evaluation to understand the effectiveness of education for professionals. Additionally, research exploring perpetrator data to analyze risk factors would also enhance case management. Finally, improving knowledge of mistreatment types across multi-agency networks of professionals who support older people with dementia is key to effective case management in the future.

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Introduction

The global population is growing older, a well-documented trend. Projections suggest that by 2050, the number of people aged 60 and above will increase from 900 million in 2015 to 2 billion, making up 22% of the world's population. This increase is concerning because elder mistreatment is also expected to rise, potentially affecting 320 million older adults worldwide by 2050.

The World Health Organization defines elder mistreatment as any single or repeated harmful act, or lack of proper action, that occurs within a trusting relationship and causes harm or distress to an older person. This type of violence violates human rights and can include physical, sexual, psychological, and emotional abuse; financial and material abuse; abandonment; neglect; and serious disrespect.

Currently, data indicates that one in six older adults experience mistreatment in community settings. However, research suggests that only about one in 24 cases is reported. The true number of mistreatment cases among older adults is likely higher due to under-reporting and difficulties in seeking help, such as fear of repercussions for oneself or the abuser.

The aging global population presents a significant challenge for countries. This includes an unavoidable increase in people diagnosed with dementia, which will place additional demands on health and social care services. Globally, about 55 million people live with dementia, with over 60% residing in lower-income countries. This number is projected to grow to 78 million by 2030 and 139 million by 2050.

Dementia is a broad term that describes a decline and loss of memory, as well as other cognitive and behavioral abilities. Common types include Alzheimer’s, Vascular, and Lewy Body dementia. This condition can have devastating effects on individuals and their families, leading to increased care needs and significant demands on caregivers.

Elder Mistreatment and Dementia

A growing body of research shows a link between dementia and elder mistreatment. Determining how common mistreatment is in this population can be difficult, as reported rates vary widely, from 0.3% to 78.4% in community settings and 8.3% to 78.3% in care facilities. However, elder mistreatment is known to be significantly more common among individuals with dementia compared to older adults without dementia. Still, estimates based only on reported cases may not show the full extent of the problem.

Studies suggest that psychological abuse and physical harm are more prevalent among individuals with dementia than other types of elder mistreatment. Financial exploitation is a concern for older adults in general, and recent research indicates it is increasing among people with dementia. Experiencing multiple types of mistreatment, known as polyvictimization, is also common for people with dementia.

Evidence suggests that several risk factors increase the likelihood of all types of mistreatment among older adults. These include: greater physical or cognitive impairment; chronic illness; frailty; difficulty moving; dependency; higher care needs; reduced ability to perform daily activities; and social isolation. Some researchers argue that a dementia diagnosis itself is a risk factor for elder abuse. Dependency can become a risk factor when an older adult relies on an abuser for financial, functional, emotional, or social support. These risk factors relate to the individual being mistreated. Additionally, research using socio-ecological models has identified risk factors at the level of the individual, the abuser, the family, the community, and society. Perpetrators are often family members, such as adult children or spouses.

Research exploring the diverse care and safety needs of older adults is limited, yet these differences can increase vulnerability to abuse, especially for older people with dementia. Dementia is a progressive disease, with each stage presenting more complex and extreme symptoms and behaviors. This increases people's care needs, leading to higher risk. Furthermore, the demands of changing care needs can be challenging for family caregivers to manage, potentially increasing the likelihood of abusive behavior.

Understanding the differences in mistreatment, care needs, and risk factors between older adults with and without dementia is essential for a comprehensive understanding of elder mistreatment. Such understanding could improve strategies for preventing future abuse and neglect. The current study uses a national UK dataset of reported elder mistreatment cases to investigate these differences by comparing cases involving older people with reported dementia to those without. All reported cases are alleged, not confirmed. The study examines whether differences exist regarding: (1) the type of mistreatment experienced, (2) care needs, and (3) risk factors.

Method

Study Design and Cases

Age UK, a charity, works nationally and globally to ensure older people are treated with dignity and respect. The organization operates a national information and advice line in the UK, offering guidance on various issues, including elder mistreatment. All inquiries are logged by staff. This study analyzed three years of anonymized reports of alleged elder mistreatment from the advice line logs (April 2014–March 2017). A total of 1408 alleged incidents were reported, of which 299 involved older people with dementia. Dementia was considered present if there was any mention of it by the reporter, either as a diagnosis or suspicion. Age UK and the researchers' universities had a data management agreement, and ethical approval was obtained.

Materials

Case logs were coded using a sheet to record information about the type of mistreatment (see Table 1 in original text), characteristics of the abused person, and the presence or absence of care needs and risk factors (see Table 2 in original text). Each item was coded as present or absent. The ten risk factors examined were chosen based on research that identified supported risk factors for both perpetrators and victims of elder abuse. Detailed descriptions were included in the coding sheet for each risk factor. For example, "dependency on the perpetrator" was considered present if the older person relied on the perpetrator for social, emotional, financial, or functional support.

Because the data was secondary (from reported incidents to Age UK, not collected for research), some entries were brief. While it was clear dementia was present or diagnosed, some entries did not expand on symptoms. For comparison cases of people without dementia, some might have been coded for cognitive decline if, for example, a general practitioner diagnosed short-term memory loss. This could indicate the start of mild cognitive impairment or dementia, but such entries were brief, and memory loss can be temporary or age-related. If dementia was not stated or suspected, the individual was coded as an older adult without dementia.

To ensure reliable coding, several steps were taken. First, two raters discussed general coding guidelines. Second, they coded five cases and compared them, making changes to coding sheet definitions to ensure agreement. Third, another ten cases were coded and checked for reliability. Finally, a subsample of 60 cases (10%) was coded independently by both raters to calculate inter-rater reliability. Four groups of coded items showed good to excellent agreement: mistreatment type, victim risk factors, perpetrator risk factors, and victim care needs.

Data Analysis

The study used a matched sample design, pairing each case involving an older person with dementia with a case involving an older person without dementia based on specific criteria. This approach was used for two reasons: first, to address unequal sample sizes, as the number of people without dementia (1109) was more than three times that of those with dementia (299); second, to control for potentially confusing variables and ensure that identified differences were due to the presence or absence of dementia.

To create the matched samples, a random number generator selected cases from the non-dementia group. These cases were then checked to see if they matched a case in the dementia group based on four variables: (1) gender; (2) the perpetrator’s relationship to the individual (e.g., spouse, family, friend, professional caregiver); (3) the reporter’s relationship to the person being mistreated; and (4) the year the incident was reported. All variables were coded from helpline call logs. A subsequent comparison found no significant differences in these four characteristics between the 299 people with dementia and 299 people without dementia, indicating that these factors were controlled.

Frequency analyses were used to describe case characteristics and mistreatment types. Statistical tests, including Chi-square analyses and t-tests, were used to compare the matched samples for categorical and continuous data, respectively. All analyses were performed using SPSS version 21.

Results

Case Characteristics

Alleged mistreatment was most often reported by a family member (90%), followed by an acquaintance or friend (7%). The person being mistreated reported in 1% of cases, and a professional in another 1%. Most older people experiencing mistreatment were female (71%). The average age of individuals mistreated was 85 years, though age was not recorded in most cases (68%). Perpetrators were more often male (47%), but gender information was missing in 20% of cases. Perpetrator age was too frequently missing to report accurately. The relationship between the abused person and the perpetrator was most often parent and adult child (59%), followed by spouse/partner (12%), other family (15%), friend/acquaintance/neighbor (5%), professional caregiver (3%), stranger (2.5%), other relationship (2%), and legal professional (2%).

Mistreatment Type

Polyvictimization, which is the simultaneous occurrence of multiple mistreatment types, was the most common form of alleged mistreatment (43%). This included two (82%), three (17%), or four (1%) types of mistreatment. Financial exploitation (43%) was the next most common single type, followed by psychological abuse (12%), physical abuse (2%), sexual abuse (1%), and neglect (1%). Sample sizes were large enough to compare polyvictimization, financial exploitation, and psychological abuse between older people with and without dementia. Financial exploitation was significantly more common among adults with dementia (47%) compared to those without (39%). However, polyvictimization and psychological abuse did not significantly differ between the two groups.

Care Needs and Risk Factors

The frequency of care needs and risk factors across both samples showed key differences. Regarding care needs, older people with dementia were significantly more dependent on others for their care than those without dementia. They were also significantly more likely to require daily care.

Concerning victim risk factors, older adults without dementia had more physical health risk factors, while older people with dementia had more experiences of depression and cognitive functioning risk factors. Given the influence of dementia on mental health and cognitive functioning, each risk factor in this category was examined separately. Cognitive decline was significantly more common among people with dementia, as was a lack of mental capacity. The presence of depression and combative/aggressive behavior did not differ between people with and without dementia. Older adults with dementia were dependent on the perpetrator in more ways than those without dementia. Older adults without dementia had more problematic attitudes toward the perpetrator and had experienced more types of historical victimization. Risk factors that showed no difference between the samples included fear/shame and ineffective stress and coping. The presence of substance use in mistreated individuals was too low for statistical analysis.

Discussion

The findings of this study support previous research indicating that older adults diagnosed with dementia face a higher risk of elder mistreatment. The results show that older adults with dementia were considerably overrepresented in the study sample at 22%, compared to the estimated 7% of older people with dementia in the UK population. Explaining this overrepresentation fully requires more information. Nevertheless, the finding that older adults with dementia were overrepresented in the sample and showed higher rates of specific mistreatment risk factors suggests they have increased vulnerability and need targeted support.

Differences between older people with and without dementia were observed in the types of alleged mistreatment experienced, care needs, and risk factors. These differences suggest that older people with dementia were more likely to experience financial exploitation; more dependent on others for their care needs; significantly more likely to require daily care; had more cognitive decline; and were more likely to lack capacity. In contrast, those without dementia had more physical health risk factors, more problematic attitudes toward the perpetrator (specifically, normalizing or denying abuse), and experienced more types of historical victimization. Without further contextual details for both samples, it is not possible to make stronger claims about these findings.

The results differed from existing studies that indicate a higher prevalence of psychological abuse and physical harm among older adults with dementia compared to other mistreatment types. However, the finding that older adults with dementia were more likely to be victims of financial exploitation aligns with recent research showing an increase in financial exploitation for older people in general and especially for those with dementia. A recent study found that while some forms of mistreatment remained stable with age, financial exploitation was highest among women aged 65 and older.

The study found that polyvictimization was common for older people both with and without dementia. This contrasts with other research that suggests people with dementia experience higher rates of polyvictimization. Since a large proportion of the total sample reported polyvictimization, it is important for anyone screening for or taking reports of elder mistreatment to consistently probe for polyvictimization to ensure thorough and accurate identification and reporting of abuse, which can facilitate appropriate support. Another important finding is that neglect was found in combination with at least one other type of abuse in many recorded combinations, suggesting a need for future research on polyvictimization.

The comparison of risk factors revealed important differences. Older people without dementia had more physical health problems (chronic illness, impaired mobility, malnourishment) than individuals with dementia, yet people with dementia had significantly more mental health conditions (depression) and cognitive problems. A lack of capacity is an important risk factor in elder abuse, and the lack of financial competency among individuals with cognitive impairment increases the risk of financial exploitation, for example, through the misuse of a power of attorney. Older adults without dementia had more problematic attitudes toward the perpetrator and prior victimization.

No significant differences were found across risk factors related to ineffective coping, experiences of fear or shame, or social care involvement between people with and without dementia. There was also no difference in the presence of combative or aggressive behavior, which was surprising given its potential co-occurrence with dementia. The small numbers in this category mean this needs further exploration. This lack of difference may reflect the true situation or the limited information in the case entries. Therefore, professionals taking initial referrals or giving advice should be trained and prompted to gather and record more detailed information about supported risk and need factors.

Regarding levels of dependency in older people with dementia, the results indicated a greater need for assistance or oversight in financial management, social interactions, and daily functional tasks like personal care or transportation. Dependency in these functional areas is a significant risk factor for abuse among people with dementia. Additionally, dependency can hinder help-seeking, as older people may fear losing care and social contact. People with dementia were also significantly more dependent on others for their needs, including daily care. This suggests a greater potential for financial exploitation due to increased contact with caregivers and more frequent opportunities.

Despite limited information about perpetrators, there was a clear indication that most victims were female (71%) and perpetrators were mostly male adult children (59%), suggesting that elder mistreatment is gendered. This aligns with existing studies. This is an important point because while a feminist perspective is often used to examine violence against women and girls, a gender-based analysis of elder mistreatment is often missing. However, some studies show more male victimhood and that males report abuse less often. Therefore, rigorous future research is needed to examine elder mistreatment using a gender-based analysis to better understand if it is gendered across different types and contexts.

Implications for Health and Social Care Professionals

The study's results have implications for health and social care professionals who provide care to older adults living with dementia, particularly regarding the identification, assessment, and management of mistreatment. Since individuals with dementia had more mental health and cognitive health risk factors (and abuse can cause or worsen mental and physical health issues), there may be a greater need for health and social care, especially as dementia progresses. Given the health needs of people with dementia and their likely regular contact with health professionals, healthcare practitioners are in a unique position to identify mistreatment and guide victims and families to support. As such, health professionals working in dementia care should be trained in using screening tools to recognize the signs and symptoms of various forms of elder mistreatment. Available screening tools can be incorporated into such training.

Improved awareness and recognition of elder mistreatment among health and social care professionals should lead to more identification and reporting of abuse, with timely and appropriate intervention, such as safety planning or advocacy. An understanding of how risk changes with the progressive nature of dementia should be reflected in assessments and interventions. For example, planned case reviews should re-evaluate risk and need, considering the progression of dementia, declining health and well-being, and the increased likelihood of formal or informal caregiver involvement, along with increased vulnerability and risk of mistreatment. If relevant for health or social care professionals without a safeguarding role, a referral should be made to a safeguarding professional who can implement appropriate management strategies.

Awareness training for all health and social care professionals should highlight research, such as this study, which indicates that adult children are often the primary perpetrators of mistreatment. It should also address that parents are highly reluctant to report abuse for various reasons, including love, shame, or embarrassment. This will enable professionals to integrate evidence-informed practices into their assessments, professional judgment, decision-making, and interventions.

To protect people upon a dementia diagnosis, ideally, two processes should occur. First, health or social care professionals should assess the elder mistreatment risk factors present in older adults with dementia, considering the potential presence or risk of abuse. Safeguarding discussions should involve the older adult as much as possible to support their choices and improve their quality of life, well-being, and safety. Including individuals as experts in their own lives and working in partnership helps them achieve better resolutions or management of their circumstances, for example, by involving them in decision-making and safety planning.

Second, in identified abuse cases, an intervention strategy should consider the individual's dependency on the perpetrator and aim to find replacement support when appropriate. At the time of reporting, older people should be informed that their best interests and safety will be prioritized, which may mean finding alternative support if the perpetrator is the primary caregiver. Implementing prevention or early help measures and supporting those with caring responsibilities to develop effective coping strategies can reduce caregiver burden and anxiety, potentially improving outcomes or preventing mistreatment entirely.

The study results show intervention may be needed for both older adults with and without dementia regarding daily care needs. When considering the role of informal (unpaid) caregiving, a critical perspective is needed on some theories, such as caregiver stress, especially since research on caregiver stress reports differing findings. One study found that abuse in informal caregiving situations was often bidirectional, meaning caregivers who were mistreated were more likely to also perpetrate abuse. Additional types of intervention could support individuals who are reluctant to end ties with their caregiver, even if this person is the source of mistreatment. Processes of normalizing or denying mistreatment in these cases may result in people being less likely to separate from the perpetrator, seek help, or accept assistance. Research to improve understanding of these complex barriers to help is needed as it could inform targeted and more effective interventions.

Finally, in case management for people with dementia, intervention might include removing the individual from an abusive setting. While this can cause distress and confusion, safeguarding them might be the priority to ensure their safety and well-being. If no significant and immediate risks are identified, to encourage continued help-seeking, a safety plan might identify community-based support and resources available to meet the person’s needs, such as specialist older persons or domestic violence services. Furthermore, a victim-centered, rights-based approach to case management, where the older adult is included as much as possible in decisions about their case, could help alleviate distress and confusion.

Limitations

One limitation of the study is the issue of unclear, missing, or incomplete data in secondary sources. Call-takers did not routinely record victim age, though when they did, individuals were within the appropriate age range. When callers described an older adult as having dementia, it does not necessarily mean the person had a confirmed diagnosis. It is also unknown if call-takers recorded a dementia diagnosis but then did not ask further questions about other health needs, leading to unrecorded co-occurring physical and mental health data. All cases in the sample were recorded as alleged elder mistreatment. It is possible that false positives and negatives occurred, and in the case of the latter, important differences in unreported mistreatment cases may exist.

Individuals with moderate to advanced dementia would be less capable of reporting mistreatment than those without dementia and, if they did, might be less able to provide information on collected risk factors. However, adults in early stages are still able to report. This could mean that both mistreatment and risk factors among people with dementia were underreported. This under-reporting may be partly mitigated by the fact that one UK study found that 88% of mistreatment reports to a helpline are made by someone other than the victim.

The study could not conduct an in-depth analysis of caregiver or perpetrator traits and behavior. The focus on victims of elder mistreatment, rather than perpetrators, reflects the data provided by Age UK, as there was little information about perpetrators in the case entries given the focus on supporting the mistreated older person and/or reporter. While focusing on victims seems appropriate given the charity's aim to support older adults experiencing mistreatment, recent research shows that risk management strategies focused on the perpetrator, such as physical treatment, social support, and communication, most commonly lead to positive case outcomes. This suggests that collecting perpetrator data and suggesting support or interventions for them could be a beneficial addition to the charity’s current practice.

Finally, some of the subsamples were small, preventing comparisons, and conclusions were drawn with caution only where statistically appropriate.

Conclusion

Elder mistreatment is a global public health concern, and existing research clearly demonstrates an increased risk of mistreatment for older adults with a dementia diagnosis. This is particularly concerning given the rising rates of dementia. Specifically, it is clear that when experiencing abuse, older people with dementia are especially vulnerable to financial exploitation and polyvictimization. The latter warrants more rigorous investigation to advance understanding of polyvictimization in older adults with dementia, or a comparison between those with and without dementia. Future research should also examine mistreatment among adults under age 65 with early-onset dementia, as this population is currently overlooked in research.

The study results suggest two victim profiles. Older people with dementia suffered from more mental health and cognitive problems and had higher care needs, while those without dementia presented with specific risks and needs related to physical health, attitudes, and prior victimization. This improved understanding of specific elder abuse risk factors for older adults with and without dementia could help identify victims and those at risk, including at specific stages of contact with the medical system, as well as reduce risk through addressing these factors. The results suggest specific educational pathways for health and social care professionals caring for older adults with dementia, as well as specific intervention targets for safeguarding professionals dealing with older people without dementia.

The lack of existing research highlights knowledge gaps in elder mistreatment case management. Future research needs to improve understanding of the types of abuse among older adults with dementia to inform case management among health and social care professionals whose responsibilities may include detecting and preventing abuse or risk. This would benefit from evaluating the effectiveness of professional education. Additionally, research exploring perpetrator data to analyze risk factors would also enhance case management. Finally, improving knowledge of mistreatment types across various professional networks that support older people with dementia is key to effective case management in the future.

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Introduction

The global number of older adults is growing, with predictions that the population aged 60 and above will significantly increase from 900 million in 2015 to 2 billion by 2050. This rise also brings concerns about elder mistreatment, which is expected to affect 320 million people worldwide by 2050. Elder mistreatment, as defined by the World Health Organization, involves any single or repeated harmful act, or lack of proper action, that occurs within a trusting relationship, causing harm or distress to an older person. This can include physical, sexual, psychological, emotional, or financial abuse, as well as abandonment, neglect, or a serious loss of dignity and respect.

Currently, about one in six older adults aged 60 and above experience mistreatment in their communities. However, research suggests that only one in 24 cases is reported, meaning the actual number is likely much higher. Factors such as fear of consequences for themselves or the abuser often prevent reporting and seeking help.

The aging population creates global challenges, including an expected increase in people diagnosed with dementia. This will place greater demands on health and social care services. Globally, approximately 55 million people have dementia, with numbers projected to rise to 78 million by 2030 and 139 million by 2050. Dementia is a broad term for the decline and loss of memory and other mental and behavioral abilities. Common types include Alzheimer’s, Vascular, and Lewy Body dementia. This condition can have serious effects on individuals and their families, leading to increased care needs and significant demands on caregivers.

Elder Mistreatment and Dementia

A growing body of research shows a clear link between dementia and elder mistreatment. While exact numbers vary widely, studies consistently find that elder mistreatment is significantly more common among older adults with dementia compared to those without it. However, because many cases are not reported, the true extent of the problem remains unclear.

Research indicates that psychological abuse and physical harm are more prevalent among individuals with dementia compared to other types of mistreatment. Financial exploitation is also a significant concern, with recent studies showing an increase in such cases among people with dementia. Additionally, experiencing multiple types of mistreatment, known as polyvictimization, is common for individuals with dementia.

Various factors increase the risk of mistreatment for all older adults, including physical or mental health problems, chronic illness, frailty, difficulty moving, dependency, high care needs, reduced ability to perform daily tasks, and social isolation. A dementia diagnosis itself is considered a risk factor for elder abuse. Dependency can be a factor when an older adult relies on the abuser for financial, functional, emotional, or social support. Perpetrators are often family members, such as adult children or spouses.

Dementia is a progressive disease, meaning its symptoms and behaviors can become more complex and extreme over time. This increases a person's care needs and, consequently, their vulnerability to abuse. The challenges of managing these changing care needs, especially for family caregivers, can also increase the likelihood of abusive behavior. Understanding the differences in mistreatment and risk factors between older adults with and without dementia is crucial for developing effective strategies to prevent future abuse and neglect. This study used UK data on reported cases of alleged elder mistreatment to compare differences based on whether the older person reportedly had dementia.

Method

Study Design and Cases

Age UK is a charity that works to ensure older people are treated with dignity and respect. The organization operates a national information and advice line in the UK, which logs every inquiry, including those about elder mistreatment. This study examined three years of anonymous reports (April 2014–March 2017) of alleged elder mistreatment from these logs. Of the 1408 reported incidents, 299 involved older people with dementia. Dementia was considered present if it was mentioned by the person reporting the incident, either as a diagnosis or a suspicion. The researchers had a data management agreement with Age UK and received ethical approval from their universities.

Materials

Case logs were coded using a detailed sheet to record the type of mistreatment, characteristics of the abused person, and the presence of care needs and risk factors. Each item was marked as either present or absent. Ten risk factors, supported by prior research, were examined. The coding sheet included specific descriptions for each risk factor; for example, "dependency on the perpetrator" was noted if the older person relied on the abuser for financial, emotional, social, or functional support.

Because the data came from general helpline calls, not specific research, some entries were brief. This meant that while dementia might be clearly present or diagnosed, additional details about co-occurring health needs were sometimes limited. Cases where dementia was not stated or suspected were categorized as older adults without dementia, even if they had other memory issues. To ensure consistent coding, the study used multiple steps. Two raters discussed guidelines, coded initial cases, and adjusted definitions to reach agreement. Finally, a sample of cases was coded by both raters independently, and the results showed good to excellent agreement across different categories of coded items.

Data Analysis

The study used a matched sample design, where each case involving an older person with dementia was paired with a similar case of an older person without dementia. This approach was chosen for two main reasons. First, it helped to balance the uneven number of cases in each group, as there were many more cases without dementia. Second, it allowed researchers to control for other variables that might influence the results, such as gender, the abuser's relationship to the person, the relationship of the reporter to the person, and the year the incident was reported. A comparison confirmed that there were no significant differences in these four characteristics between the matched groups, ensuring that any identified differences could be linked to the presence or absence of dementia.

To analyze the data, frequency analyses were used to describe case characteristics and types of mistreatment. Statistical tests, including Chi-square analyses and t-tests, were used to compare the matched samples, depending on whether the data was categorical or continuous. All analyses were performed using SPSS software.

Results

Case Characteristics

Alleged mistreatment was most frequently reported by a family member (90% of cases), followed by an acquaintance or friend (7%). The person experiencing mistreatment rarely reported it themselves (1%). Most of the older people who were mistreated were female (71%). The average age of those mistreated was 85 years, though age information was often missing. Perpetrators were more often male (47%), and their age was frequently not recorded. The most common relationship between the person abused and the perpetrator was a parent and their adult child (59%), followed by a spouse or partner (12%), or other family members (15%).

Mistreatment Type

Experiencing multiple types of mistreatment at once, known as polyvictimization, was the most common form of alleged mistreatment (43% of cases). This involved two (82%), three (17%), or four (1%) different types of abuse. Financial exploitation was the next most common single type of alleged mistreatment (43%), followed by psychological abuse (12%). Physical abuse (2%), sexual abuse (1%), and neglect (1%) were less common as single types of mistreatment. Financial exploitation was significantly more common among older adults with dementia (47%) compared to those without dementia (39%). However, polyvictimization and psychological abuse did not show a significant difference between the two groups.

Care Needs and Risk Factors

The study found significant differences in care needs and risk factors between the two groups. Older adults with dementia were considerably more dependent on others for their care needs and significantly more likely to require daily care than those without dementia. When looking at victim risk factors, older adults without dementia had more physical health risk factors, such as chronic illness or impaired mobility. In contrast, older people with dementia had more experiences with depression and cognitive problems; specifically, cognitive decline and a lack of mental capacity were much more common in this group.

Additionally, older adults with dementia were dependent on the perpetrator in more ways (e.g., financial management, social interactions, functional tasks). Older adults without dementia were more likely to have problematic attitudes towards the perpetrator, such as normalizing or denying the abuse, and had a history of experiencing more types of victimization. Risk factors like fear or shame, ineffective coping strategies, and aggressive behavior did not differ significantly between the groups. Information on substance use in mistreated individuals was too limited for analysis.

Discussion

This study's findings support earlier research indicating that older adults diagnosed with dementia face a higher risk of elder mistreatment. In this sample, individuals with dementia were significantly overrepresented, making up 22% of the cases compared to their estimated 7% presence in the general UK older adult population. This overrepresentation, combined with a higher prevalence of specific risk factors for mistreatment among those with dementia, suggests they have increased vulnerability and a greater need for targeted support.

The study identified differences between older people with and without dementia concerning the types of alleged mistreatment they experienced, their care needs, and their risk factors. Older adults with dementia were more prone to financial exploitation, were more dependent on others for care, and were more likely to require daily care. They also exhibited more cognitive decline and a greater lack of mental capacity. In contrast, those without dementia showed more physical health risk factors, had more problematic views toward the abuser (such as denial), and had a greater history of prior victimization. These findings highlight distinct patterns of risk and vulnerability for each group.

Our results differ from some studies that found a higher prevalence of psychological and physical abuse among older adults with dementia. However, our finding that financial exploitation was more common among individuals with dementia aligns with recent research. The study also found that polyvictimization (experiencing multiple types of mistreatment) was common for both groups. This suggests that professionals screening for or receiving reports of elder mistreatment should routinely ask about multiple forms of abuse to ensure thorough identification and reporting, which can lead to more appropriate support. It was also notable that neglect often occurred alongside other types of abuse.

The comparison of risk factors revealed important distinctions. Older people without dementia had more physical health issues like chronic illness or impaired mobility. Conversely, individuals with dementia experienced more mental health conditions and cognitive problems, including a lack of capacity, which is a key risk factor for financial exploitation. The study also found that older adults without dementia were more likely to have problematic attitudes towards the perpetrator and a history of prior victimization. While limited perpetrator information was available, the data showed that most victims were female, and perpetrators were frequently male adult children. This highlights the importance of using a gender-based analysis in future elder mistreatment research.

Implications for Health and Social Care Professionals

The study's findings have important implications for health and social care professionals who work with older adults, especially those living with dementia, regarding how they identify, assess, and manage mistreatment. Since individuals with dementia often have more mental and cognitive health risk factors, and abuse can worsen these conditions, there is a greater need for health and social care as dementia progresses. Given their regular contact with older adults, healthcare professionals are in a unique position to identify mistreatment and guide victims and families to support. They should receive training in using screening tools to recognize the signs and symptoms of various forms of elder mistreatment.

Improved awareness and recognition among professionals should lead to more identified and reported cases, allowing for timely and appropriate interventions like safety planning or advocacy. Assessments and interventions should also acknowledge that risk levels can change as dementia progresses. For example, regular case reviews should re-evaluate risks and needs, considering the increasing care requirements and vulnerability that come with dementia. When appropriate, a referral should be made to a safeguarding professional who can implement specific management strategies.

Training for all health and social care professionals should emphasize that adult children are often the primary perpetrators of mistreatment. It is important for professionals to understand that parents may be very reluctant to report abuse by their children due to feelings of love, shame, or embarrassment. This knowledge can help professionals make informed decisions and interventions. To protect individuals when they receive a dementia diagnosis, health or social care professionals should assess their risk factors for elder mistreatment and consider the potential for abuse. These discussions should involve the older adult as much as possible to support their choices and improve their quality of life and safety.

If abuse is identified, intervention strategies should consider how dependent the older adult is on the perpetrator and aim to find alternative support if needed. When a report is made, older people should be assured that their best interests and safety are the priority, which might mean finding different care arrangements if the abuser is the primary caregiver. Implementing prevention or early intervention measures, and helping caregivers develop coping strategies to reduce their stress, could improve outcomes or prevent mistreatment.

The study also showed that both older adults with and without dementia often need daily care. For informal caregivers, it's important to understand the complexities of caregiving, as some research suggests that abuse can be two-sided, where mistreated caregivers may also become abusive. Other interventions could support individuals who are hesitant to separate from an abusive caregiver. Research is needed to better understand the barriers that prevent people from seeking help, which could lead to more effective interventions. In cases involving individuals with dementia, intervention might involve moving the person from an abusive situation. While this can cause distress, ensuring their safety and well-being should be the priority. For cases where immediate risks are not present, a safety plan could identify community support and resources, such as specialist services for older persons or domestic violence. A victim-centered approach, where the older adult is included in decisions as much as possible, can help ease distress and confusion.

Limitations

One limitation of this study is the presence of unclear, missing, or incomplete data within the secondary records. Call-takers did not always record the victim's age, and while they might note a dementia diagnosis, they sometimes did not collect further details on other health needs. It is also possible that some older adults without a dementia diagnosis still experienced cognitive decline not recorded by call-takers. All cases in the sample were recorded as alleged mistreatment, meaning there could be both false positives and unreported cases that were missed.

Individuals with more advanced dementia might be less able to report mistreatment or provide detailed information about risk factors, potentially leading to underreporting of abuse in this group. However, this may be somewhat offset by the fact that most reports to helplines are made by someone other than the victim. The study was also unable to conduct a deep analysis of caregiver or perpetrator characteristics due to limited information in the case entries, which focused on supporting the mistreated older person. Lastly, some of the specific categories examined had very small sample sizes, limiting the ability to draw firm conclusions in those areas.

Conclusion

Elder mistreatment is a significant public health concern globally. Existing research, supported by this study, clearly shows that older adults with a dementia diagnosis face a higher risk of mistreatment. This is especially worrying given the increasing number of people living with dementia. Specifically, older people with dementia are very vulnerable to financial exploitation and polyvictimization. More research is needed to understand polyvictimization in this group and to compare it to older adults without dementia. Future studies should also look at mistreatment among adults under age 65 who have early-onset dementia, as this group is often overlooked in current research.

The study's findings suggest two distinct victim profiles. Older people with dementia experienced more mental health and cognitive problems and had greater care needs. In contrast, those without dementia showed different risks related to their physical health, attitudes, and past victimization. This deeper understanding of specific risk factors for both groups can help identify victims and those at risk, particularly at various points of contact with the healthcare system. It can also help reduce risk by addressing these factors. The results indicate a clear need for specific training for health and social care professionals who care for older adults with dementia, as well as targeted interventions for safeguarding professionals working with older people without dementia.

There are gaps in current knowledge regarding elder mistreatment case management. Future research should focus on understanding the types of abuse experienced by older adults with dementia to improve case management practices for health and social care professionals involved in detecting and preventing abuse. Evaluating the effectiveness of professional training would also be beneficial. Furthermore, collecting and analyzing data on perpetrators would enhance case management strategies. Finally, improving knowledge of mistreatment types across various professional networks that support older people with dementia is essential for effective future case management.

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Introduction

Around the world, the number of older people is growing. It is thought that by 2050, the number of people aged 60 and older will grow from 900 million in 2015 to 2 billion. This is worrying because it is also thought that elder mistreatment, or abuse of older people, will go up, possibly affecting 320 million people by 2050. The World Health Organization says elder mistreatment is when an older person is harmed or upset by someone they trust. This can be a single act or something that happens again and again. It goes against human rights and includes physical harm, sexual harm, mental harm, financial harm, being left alone, or not being cared for, and not being treated with respect.

Today, about 1 in 6 older adults faces mistreatment in their communities. However, studies show that only 1 in 24 cases is reported, often because people are scared of what might happen to them or the person causing harm. Also, as more people get older, more will have memory problems like dementia. Around 55 million people worldwide currently have dementia, and this number is expected to rise greatly by 2050. Dementia is a term for losing memory and other thinking skills, which can be very hard for older people and their families because it means they need a lot more care.

Elder Mistreatment and Dementia

There is clear information that older adults with dementia are more likely to face elder mistreatment. While exact numbers change, abuse rates are known to be much higher for people with dementia than for those without. Research shows that people with dementia often experience more mental abuse and physical harm. Financial exploitation, or money problems, is also a growing worry for older people, especially those with dementia. It is also common for people with dementia to experience many types of harm at the same time.

Many things can put older adults at risk of mistreatment. These include having physical or thinking problems, long-term sickness, weakness, trouble moving, needing help, and being alone. Just having a dementia diagnosis can be a risk factor for abuse. If an older person depends on someone who then harms them for money or daily support, that is also a risk. Often, the people who commit abuse are family members, like adult children or spouses.

It is important to understand how abuse, care needs, and risks differ for older adults with and without dementia. This can help create better ways to prevent abuse. This study used reports of alleged elder mistreatment from the UK to see these differences. The study looked at the types of mistreatment, care needs, and risk factors for older people said to have dementia compared to those who did not. All cases examined were claims of abuse, not proven ones.

Method

Age UK is a charity that helps older people in the UK. They have a phone line where people can report elder mistreatment. This study looked at records from this phone line over three years, from April 2014 to March 2017. In total, 1408 alleged cases of elder mistreatment were reported. Out of these, 299 cases involved older people who were said to have dementia. Dementia was noted if the person reporting it mentioned it was diagnosed or suspected.

Staff used a special sheet to record what was in each case report. They noted the type of mistreatment (see Table 1), facts about the person who was abused, and if they needed care or had risk factors (see Table 2). For example, if the older person depended on the abuser for money or help, this was marked. Sometimes, the notes were short, so it was not always clear if memory problems were truly dementia.

To make sure the information was recorded correctly, two people worked together. They practiced coding some cases and discussed any differences to make sure they agreed. Then, they checked 10% of the cases without seeing each other's work. This check showed that they mostly agreed on how the cases were coded.

The study used a special method to compare the cases. For each person with dementia who was reportedly abused, a similar case was found of an older person without dementia who was also reportedly abused. They were matched based on things like gender, who the abuser was, who reported the abuse, and the year it happened. This helped make sure any differences found were due to dementia, not other reasons. The study then used computer programs to look at the numbers and see what was different between the two groups.

Results

Most reports of alleged mistreatment came from family members (90%). The older person said to be harmed was usually female (71%) and about 85 years old. The person said to be causing harm was more often male (47%) and most often an adult child (59%) or spouse (12%).

Being harmed in many ways at once, called polyvictimization, was the most common type of alleged mistreatment (43%). This meant experiencing two, three, or even four types of harm together. Financial exploitation (43%) was the next most common single type of alleged mistreatment. Financial exploitation was significantly more common for older adults with dementia than for those without. Other types of alleged mistreatment did not differ much between the two groups. Table 1 shows the different ways abuse was combined.

When it came to care needs (Table 2), older people with dementia were more dependent on others for their care than those without dementia. They were also more likely to need daily care.

Regarding risk factors, older people without dementia had more physical health problems. But older people with dementia had more mental health issues and thinking problems, like memory loss or not being able to make choices. They also depended on the alleged abuser in more ways. Older adults without dementia were more likely to have unhealthy attitudes toward the alleged abuser, such as accepting or denying the abuse. They also had experienced more types of harm in the past. Risk factors like fear, shame, or trouble coping did not differ between the two groups.

Discussion

The results of this study support earlier research that shows older adults with a dementia diagnosis are at a higher risk of elder mistreatment. In this study, older adults with dementia made up 22% of the cases, which is much higher than their estimated 7% in the general UK population. This suggests that older adults with dementia in this study were more vulnerable and needed specific help.

Differences were found between older people with and without dementia in the types of alleged mistreatment, care needs, and risk factors. Those with dementia were more likely to experience financial exploitation and to need more daily care and help from others. They also had more cognitive (thinking) problems and were more likely to lack the ability to make decisions. In contrast, older adults without dementia had more physical health problems. They also had more unhealthy attitudes toward the alleged abuser and had experienced more types of harm in the past. More detailed information is needed to fully understand these findings.

This study's findings about financial exploitation being more common for older adults with dementia are consistent with other recent research. However, this study did not find a higher rate of psychological abuse or physical harm for people with dementia, which other studies have reported. The study found that being harmed in many ways at once (polyvictimization) was common for both older adults with and without dementia. This means that anyone looking for or taking reports of elder mistreatment should always check for many types of harm to ensure all abuse is found and reported.

The study also showed that most victims were female, and most alleged abusers were male adult children. This suggests that elder mistreatment often follows a pattern related to gender. More research is needed to understand if elder mistreatment shows gender patterns in different types of abuse and situations.

Implications for Health and Social Care Professionals

The study's results are important for professionals who care for older adults with dementia. These professionals are in a good position to spot, check for, and manage mistreatment. They should be trained to use tools that help them recognize the signs of different types of elder mistreatment. This training should also teach them that adult children are often the abusers and that older people may not want to report abuse because of love, shame, or embarrassment.

When abuse is found, help should be given quickly. For people with dementia, this means thinking about their changing needs as the disease gets worse. It is important to include the older adult in decisions about their safety as much as possible, even if it causes some worry or confusion. If there is a clear danger, it might mean moving the older person away from the abusive situation to ensure their safety. Also, helping caregivers manage their stress and worries can prevent abuse from happening in the first place.

This study showed that older people often depend on the abuser, which makes it hard for them to seek help. When abuse is found, new support should be put in place if the abuser is also the main caregiver. More research is needed to understand why some people are unwilling to leave an abusive caregiver. This could lead to better and more focused help.

Limitations

This study had some limits because the information came from phone calls and was not collected specifically for research. This meant some details were missing or unclear, like the exact age of victims. Also, when callers mentioned dementia, it was not always a confirmed diagnosis. It is possible that some cases of abuse were missed or wrongly recorded.

People with more advanced dementia might not be able to report mistreatment as easily as those without dementia. This could mean that abuse and risk factors among people with dementia were not fully reported here. However, this might be balanced by the fact that most reports to this phone line come from someone other than the person being abused.

The study did not get much information about the abusers themselves, as the charity's main goal is to support the abused older person. However, future research could benefit from looking at information about abusers to improve ways to manage cases. Lastly, some groups in the study were small, so the findings should be taken with care.

Conclusion

Elder mistreatment is a serious global health issue. Existing information shows that older adults with a dementia diagnosis face a higher risk of mistreatment. It is especially clear that when abused, older people with dementia are very open to financial exploitation and being harmed in many ways at once. Knowing these differences in risk factors for older adults with and without dementia can help find victims and those at risk.

The results of this study suggested two general types of victims. Older people with dementia had more mental and thinking problems and higher care needs. Those without dementia had more physical health issues, certain attitudes, and had been abused before. This better understanding can help prevent abuse and reduce risks. The results also suggest specific training for health and social care professionals who care for older adults with dementia, as well as clear goals for professionals dealing with older people without dementia.

More research is needed to learn about the types of abuse older adults with dementia experience. This will help professionals manage cases better. Research that looks at information about abusers would also improve how cases are handled. Lastly, sharing this knowledge across different groups of professionals who help older people with dementia is key to good case management in the future.

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Footnotes and Citation

Cite

Rogers, M. M., Storey, J. E., & Galloway, S. (2023). Elder Mistreatment and Dementia: A Comparison of People with and without Dementia across the Prevalence of Abuse. Journal of Applied Gerontology, 42(5), 909–918. https://doi.org/10.1177/07334648221145844

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