Elder abuse and family care of older people in Europe: some reflections based on EUROFAMCARE and related findings

1. Presentation for the meeting of the FERPA Executive Committee, Brussels, 28-29 October 2008 Elder abuse and family care of older people in Europe:some reflections based on EUROFAMCARE and related findings Lamura G.*, Mnich E., Wojszel B., Krevers B., McKee K., Mestheneos L., Melchiorre M.G., Principi A., Fabbietti P. & Döhner H. on behalf of the EUROFAMCARE research group *: Address for correspondence: I.N.R.C.A., Department of Gerontological Research, Via S. Margherita 5, 60124, Ancona, Italy; e-mail: g.lamura@inrca.it

2. Germany: Döhner H. (Co-ordinator), Kofahl C., Lüdecke D., Mnich E., Kohler S., Lange N., Seidl K., Meyer M. (Hamburg) and Rothgang H., Becker R., Timm A., Knorr K., Lessmann O. (Bremen); Greece: Mestheneos E., Triantafillou J., Prouskas C., Kontouka S., Goltsi V., Loukissis A., Mestheneou K.; Italy: Lamura G., Balducci C., Melchiorre M.G., Quattrini S., Spazzafumo L., Polverini F., Principi A., Gianelli M.V.; Poland: Bien B., Wojszel B., Synak B., Czekanowski P., Bledowski P., Pedich W.; Sweden: Öberg B., Krevers B., Johansson S.L., Davidson T.; UK: McKee K., Nolan M., Barber L., Brown J.; AGE-European Older People's Platform: Parent A.-S., Patel J., Daurèle C., Pflüger K., Thorpe E. The EUROFAMCARE study (2004-2005): - topic: situation of supports for family carers of older people in EU - methodology: survey based on 6.000 face-to-face interviews - web-site:www.uke.uni-hamburg.de/eurofamcare The EUROFAMCARE (EFC) group

3. Contents of presentation • Family carer’s burden and elder abuse: introduction • Risk factors for carer’s burden and potential situations of neglect • Final remarks

4. Family carer’s burden and elder abuse: introduction • Family care is the most relevant form of support provided to dependent older people in the community (often continuing even after institutionalisation).

5. Family carer’s burden and elder abuse: introduction • Family care is the most relevant form of support provided to dependent older people in the community (often continuing even after institutionalisation). • Most people provide family care for positive motivations, such as love, affection and emotional bonds, and derive from it positive feelings.

6. What factors influence families’ decision to care?

7. Family carer’s burden and elder abuse • Family care represents the most relevant form of support provided to dependent older people living in the community (often continuing when the older person is institutionalised). • Most people provide family care for positive motivations, such as love, affection and emotional bonds, and derive from it positive feelings. • Sometimes, however, family care becomes the only solution available, i.e. no longer a “free choice”…

8. What factors influence families’ decision to care?

9. Family carer’s burden and elder abuse • Family care represents the most relevant form of support provided to dependent older people living in the community (often continuing when the older person is institutionalised). • Most people provide family care for positive motivations, such as love, affection and emotional bonds, and derive from it positive feelings. • Sometimes, however, family care becomes the only solution available, due to a feeling of duty/obligation towards the older person or the lack of care alternatives. • For these and other reasons, family care might become then also a stressful, burdening experience…

10. Carers’ burden in the EUROFAMCARE study Components identified by carers as responsible for a “negative impact” of caregiving: • negative effects on physical health and emotional well-being; • difficulties in relations with family and friends; • financial difficulties; • sensation that caregiving is “too demanding” and makes carers “feel trapped”.

11. Frequency of negative effects due to caregiving

12. Family carer’s burden and elder abuse • Family care represents the most relevant form of support provided to dependent older people living in the community (often continuing when the older person is institutionalised). • Most people provide family care for positive motivations, such as love, affection and emotional bonds, and derive from it positive feelings. • Sometimes, however, family care becomes the only solution available, due to a feeling of duty/obligation towards the older person or the lack of care alternatives. • For these and other reasons, family care might become then a stressful, burdening experience… • … leading to the abuse of the older person who is actually supposed to be cared for.

13. Frequency of elder abuse by family carers Different definitions and methodologies in collecting data lead to divergent findings in terms of prevalence of elder abuse perpetrated by family caregivers (NCEA 2002). Taking for instance physical abuse: • 5% (Paveza et al 1992); • 6% (Pillemer & Suiter 1992); • 11% (Compton et al. 1997); • 12% of all callers to a help line for caregivers (Coyne et al 1993); • 23% of non-spousal carers (Wolf 1996).

14. Elder abuse and caregiver’s burden: risk factors • Risk factors for elder abuse often represent predictors of caregiver’s stress and burden as well.

15. Caregiver burden and elder abuse: risk factors Different studies suggest that risk factors for carer’s burden and stress also predict elder abuse (Anetzberger 1987; Compton et al. 1997; Paveza et al 1992; Coyne et al 1993; Pillemer & Suiter 1992), with regard to: • cohabitation; • amount of care provided; • care recipient’s behavioural disturbances; • carer’s depression & low self-esteem; • carers’ subjective perception of (past) relationship with care recipient (including situations of “mutual abuse”); • carer’s feeling about help received from support networks.

16. Elder abuse and caregiver’s burden: risk factors • Risk factors for elder abuse often represent predictors of caregiver’s burden and stress. • Interventions able to reduce carer’s burden are likely to have a preventive effect on elder abuse, too.

17. The framework of elder abuse and carer’s burden Risk factors (+) Carer’s burden Carer’s stress Elder abuse Preventing factors (-)

18. Elder abuse and caregiver’s burden: risk factors • Risk factors for elder abuse often represent predictors of caregiver’s burden as well. • Interventions able to reduce carer’s burden are likely to have a preventive effect on elder abuse, too. • By means of a scale measuring the frequency of negative caregiving aspects, we could identify some factors which increase the probability for carers to experience high burden.

19. Risk factors for carer’s burden(odds-ratio=probability for carer to experience high burden)

20. Potential risk factors for “neglect”(% of carers’ willingness to continue caregiving)

21. Potential risk for “neglect” by country(% of carers unwilling to continue caregiving)

22. 22 Restrictions reported by employed carers % N = 4427; only carers <= 65 years

23. Employment status of family carers by country Employed Not employed

24. 24 Restrictions reported by not employed carers % N = 2093; only carers <= 65 years

25. Carers using support services, by country %

26. Service characteristics considered most important %

27. Households employingprivately paid migrant home care workers %

28. Migrant home carers in Italy by kind of employment contract Lucchetti et al. 2005

29. Thank you!