Abuse of Older Chinese with Dementia Elsie Yan

1. Abuse of Older Chinese with Dementia Elsie Yan Social Work and Social Administration, The University of Hong Kong Timothy Kwok School of Public Health, The Chinese University of Hong Kong Schwinger Wong The Hong Kong Society for the Aged

2. Elder Abuse • 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” (UK’s Action on Elder Abuse, 1995) • Different types of abuse may include: • physical assault, • sexual exploitation, • psychological or verbal aggression, • abandonment, • financial or material exploitation, • or neglect (National Center on Elder Abuse, 1998)

3. Prevalence • Elder abuse is a prevalent phenomenon across the world: • In the US, 0.5-10% of those aged 65 or older had been abused by someone on whom they depended for care or protection (NRC, 2003; Filner et al., 2002) • In Canada - prevalence of 1.1% for verbal abuse, 0.5% for physical abuse, 2.5% for material abuse, and 0.4% for neglect have been reported (Podnieks, 1990) • In Britain - prevalence rates were 5.4% for verbal abuse, 1.5% for physical abuse, and 1.5% for financial abuse (Bennett & Kingston, 1993) • Huge variations in prevalence estimates – Difference in definition and operational definition, sampling frame, methodological issues

4. Elder Abuse in Hong Kong • Survey of 355 older Chinese (Yan & Tang, 2001) • 21.4% experienced at least one abusive behavior by their caregivers during the surveyed year • Verbal Abuse (20.8%); Physical Abuse (2%); Social Abuse (2.5%) • Survey of 464 caregivers of older persons (Yan & Tang, 2003) • Proclivity to Verbal Abuse (20%), - Physical Abuse (2.4%), - Social Abuse (2.4%)

5. Impact of Elder Abuse • Physical injuries resulting from assaults • Psychological distress e.g. depressive symptoms (Harris, 1996) • and in some cases, Death A 9-year prospective study found that older persons who were abused had a greater mortality risk than their intact counterparts after adjusting for demographic characteristics, chronic diseases, functional status, social networks, cognitive status, and depressive symptoms (Lach, 1998)

6. Risk Factors • Older adults with cognitive or physical impairments are more likely to be abused by their caregivers than other older adults (Choi & Mayer, 2000; Kim, 2003). • Social isolation and shared living environment are two major factors related to abused of older persons with dementia (Hansberry, Chen, & Gorbien, 2005; National Research Council, 2003; Shugarman, Fries, Wolf, & Morris, 2003). • Behavioral disturbances, common to many demented elderly, also predicts elder abuse (Bredthauer et al., 2005; Sasaki et al., 2007). • Coping with behavioral disturbances is one of the most demanding task for caregivers (Coen et al., Arai et al., 2004).

7. Mixed findings have been observed on the role of the caregivers’ kinship to the care-recipients. Beach et al (2005) suggested that spouse caregivers were more prone to conduct potentially harmful behaviors, while Fulmer et al (2005) showed that patient caregiver kinship was not associated with elder neglect • Caregiver’s stressand emotional distress also have serious implications for mistreatment and abuse (Parks & Novielli, 2000). • Depressed or resentful caregivers were more likely to be involved in cases of elder abuse and neglect serious enough to warrant the attention of formal service agencies (Bonne & Wallance, 2003).

8. Elder Abuse in Hong Kong • Compared to those who were not abused, elder abuse victims reported higher levels of: • Somatic complaints • Anxiety • Depressive symptoms • Social dysfunctions • (Yan & Tang, 2001) • Incidence of abuse was related to: • Victim’s poor visual and memory abilities • Perceived dependence on the caregiver • Perceived caregiver’s non-dependence on the relationship • (Yan & Tang, 2004)

9. Dementia and Elder Abuse • Older people with dementia have been described as comprising a high risk groups for domestic violence (Dyer et al., 2000; Hansberry et al., 2005; Wang, 2006). • Estimates of the prevalence of abuse of older persons with dementia ranged from 5.4% (Paveza et al., 1992) to 11.9% (Coyne et al., 1993) • These rates far exceed the 1% to 4% prevalence rates typically cited for all older adults (Lachs et al., 1997). • However, research on abuse of people with dementia remains sparse. A systematic review found only 7 studies (Cooper et al., 2007).

10. Filial Piety • Filial piety demands that one should provide for the material and mental well being for one’s aged parents, perform ceremonial duties of ancestral worship, take care to avoid harm to one’s body, ensure the continuity of the family line and in general discipline oneself so as to bring honor and avoid bringing shame to the family name (Ho, 1997). • According to these ethnical and moral principles, adult offspring are expected to be responsible for their parents’ well being as the parents grow old (Chao, 1983).

11. Objectives • To explore the prevalence and severity of abuse of Chinese elders with dementia in Hong Kong • To explore the effectiveness of the caregiver stress model in understanding abuse of Chinese elders with dementia • To determine the relationship between behavioral disturbances and caregiver stress, and their association with abuse • To determine the association between filial piety and abuse

12. Procedure • The inclusion criteria of the caregivers were: • (1) family member to an older person diagnosed with dementia; • (2) identified as the principle caregiver of the older persons; • (3) living with the older person for at least half of the time; • (4) able to speak and understand Cantonese. • A total of 135 caregivers were referred to the present study from local social service agencies, 122 were successfully interviewed (response rate = 90%) • Having explained the study and confidentiality issues, written consent was obtained from all participants.

13. Participants • 122 family caregivers providing care to community dwelling older persons with dementia. • All care recipients received diagnosis of dementia from local physician. They were mostly female (74.6%, N=91), with ages ranged from 59 to 103 (mean=82.59, SD=8). Majority also suffer other chronic condition (75.4%, N=92). • Family caregivers were mostly female (76.2%, N=93), with ages ranged from 17 to 85 (mean=56.72, SD=13.03). Most was the care recipients’ adult child (62.3%, N=76), the rest were the care recipients’ spouse (26.2%, N=32), grandchild (2.5%, N=3), or other family relatives (9%, N=11). Most were married (71.3%, N=87), 25 were single (20.5%), 7 were divorced (5.7%), and 3 were widowed (2.5%).

14. Participants • 9% of them did not receive any education (N=11), 21.3% went to primary school (N=26), 53.3% attended secondary school (N=65), only 16.4% received tertiary education (N=20). • Half of them had a monthly household income less than USD 2500 (56%, N=68), 26% had monthly household income between USD 2500 and 5000, only 14.8% had monthly household income above USD5000. • Participants reported that they live with the care recipients in the same household on an average of 17.72 days (SD=14.81). • Majority of the participants used some form of community services (80.3%, N=98), including : respite care (16.39%, N=20), home help (2.5%, N=3), day care services (62.3%, N=76).

15. Instruments • Demographic characteristics: caregivers’ age, gender, education level, marital status, employment status, number of months spent as a caregiver, training received, use of community services in relation to elder care; the care recipients’ age, gender, presence of chronic condition, and living arrangement. • Care-recipients’ behavioral disturbances - the 29-item caregiver rating Cohen-Mansfield Agitation Inventory (CMAI, Cohen-Mansfield, 1986) • Caregiver stress - the 22-item Zarit Burden interview (BI; Zarit, Orr, & Zarit, 1985)

16. Instruments • Care recipients’ functional impairment - the Lawton Instrumental Activities of Daily Living (Lawton IADL; Lawton & Brody, 1969). • Filial piety - the 10-item Filial Piety and Ancestral Worship subscale of Chinese Individual Traditionality Scale (Yang & Huang, 1991) • Abuse - the two subscales of psychological aggression and physical assault from the Revised Conflict Tactic Scale (CTS2; Straus et al., 1996)

17. Results & Discussion • Abuse of older persons with dementia by their family caregivers is common: • 62% of the caregivers in this study admitted to displaying some form of violence towards the older care recipients in the past month, a rate much higher than those observed in cognitively competent older Chinese (21.4%, Yan & Tang, 2001). • Similar to the findings from previous studies, verbal abuse is more prevalent than physical abuse: • 62% reported verbal aggression 18% reported physical abusive behaviors against the older care recipients in the past month • The high prevalence of elder abuse in older persons with dementia is consistent with previous findings which showed people perceive abusive behavior as less abusive when the victim has dementia (Matsuda, 2007)

18. Results & Discussion • Verbal aggression was related to a younger age of the care recipient (r=-.18, p<.05), larger number of days living in a shared living environment (r=.37, p<.01), a higher level of agitated behavior displayed by the care recipient (r=.25, p<.01), and stronger sense of caregiver’s stress (r=.33, p<.01). • Physical abuse was only related to larger number of days living in a shared living environment (r=.24, p<.01). • Number of years since first assuming the care-giving duty, care-recipient’s IADL, caregivers’ sense of filial piety, caregivers’ perceived emotional social support were not related to reports of verbal and physical aggression (p>.05).

19. Results & Discussion • Hierarchical regression analyses were performed to unearth the relative contribution of various risk factors in predicting caregivers’ reports of abuse. • For subsequent regression analyses, • demographic variables including care recipient’s age, care recipient’s gender, number of days living in a shared living environment, were entered as Block 1. • Care-recipient’s behavioral disturbances was entered as Block 2. • Caregiver’s stress was entered as Block 3.

20. Results & Discussion • For verbal abuse, the 3 blocks of predictor variables accounted for 29% of the variance. • Verbal abuse was best predicted by a larger number of days living in a shared living environment and a high level of caregiver’s stress (β = .35 and .24 respectively, p<.001 and .01). High level of behavioral disturbance displayed by the care recipient was also predictive for verbal abuse (β = .25, p<.01), but the effect diminished when caregiver’s stress was entered into the model. • The various factor accounted for minimal variance in physical abuse, the three blocks of predictor variables accounted for 7% of the variance. • Physical abuse was only predicted by a larger number of days living in a shared living environment (β = .24, p<.001).

21. Limitations • Small non-representative sample – results may not be generalizable to the larger population • Cross sectional study – cannot establish casual relationship • Self report – participants likely to under report incidents of abuse • Some important factors not examined in this study, e.g. caregiver’s personality, substance use, psychiatric illness • These limitations should be addressed in future studies

22. Implications • Despite the above limitations, results of the this study have important implication for public policy for dementia care and on the design and implementation of elder abuse intervention programs • Education should be provided to family caregivers to heighten their awareness of rights of older care recipients, behaviors that constitute elder abuse, etc. • Education should also inform family caregivers of the prognosis of dementia, and to advance their understanding of care recipients’ behavioral disturbance • Training specific to dementia care should be provided to family caregivers • Community services should be designed to better tailor the needs of family caregivers