Caring for the caregiver in dementia

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doi:doi: 10.12788/jfp.0606

Behavioral Health

Caring for the caregiver in dementia

J Fam Pract. 2023 June;72(5):215-219 | doi: 10.12788/jfp.0606

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References

1. Alzheimer’s Association. 2023 Alzheimer’s Disease Facts and Figures. Alzheimers Dement. 202319:1598-1695. doi: 10.1002/alz.13016

2. Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J of Nurs Sci. 2020;7:448-435. doi: 10.1016/j.ijnss.2020.07.012

3. Ory MG, Hoffman RR III, Yee JL, et al. Prevalence and impacts of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39:177-185. doi: 10.1093/geront/39.2.177

4. Baharudin AD, Din NC, Subramaniam P, et al. The associations between behavioral-psychological symptoms of dementia (BPSD) and coping strategy, burden of care and personality style among low-income caregivers of patients with dementia. BMC Public Health. 2019;19(suppl 4):447. doi: 10.1186/s12889-019-6868-0

5. Cheng S-T. Dementia caregiver burden: a research update and critical analysis. Curr Psychiatry Rep. 2017;19:64. doi: 10.1007/s11920-017-0818-2

6. Reed C, Belger M, Andrews JS, et al. Factors associated with long-term impact on informal caregivers during Alzheimer’s disease dementia progression: 36-month results from GERAS. Int Psychogeriatr. 2020;32:267-277. doi: 10.1017/S1041610219000425

7. Gilhooly KJ, Gilhooly MLM, Sullivan MP, et al. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr. 2016;16:106. doi: 10.1186/s12877-016-0280-8

8. Haley WE, Levine EG, Brown SL, et al. Psychological, social, and health consequences of caring for a relative with senile dementia. J Am Geriatr Soc. 1987;35:405-411.

9. Bom J, Bakx P, Schut F, et al. The impact of informal caregiving for older adults on the health of various types of caregivers: a systematic review. The Gerontologist. 2019;59:e629-e642. doi: 10.1093/geront/gny137

10. Fonareva I, Oken BS. Physiological and functional consequences of caregiving for relatives with dementia. Int Psychogeriatr. 2014;26:725-747. doi: 10.1017/S1041610214000039

11. Del-Pino-Casado R, Rodriguez Cardosa M, Lopez-Martinez C, et al. The association between subjective caregiver burden and depressive symptoms in carers of older relatives: a systematic review and meta-analysis. PLoS One. 2019;14:e0217648. doi: 10.1371/journal.pone.0217648

12. Del-Pino-Casado R, Priego-Cubero E, Lopez-Martinez C, et al. Subjective caregiver burden and anxiety in informal caregivers: a systematic review and meta-analysis. PLoS One. 2020;16:e0247143. doi: 10.1371/journal.pone.0247143

13. De Souza Alves LC, Quirino Montiero D, Ricarte Bento S, et al. Burnout syndrome in informal caregivers of older adults with dementia: a systematic review. Dement Neuropsychol. 2019;13:415-421. doi: 10.1590/1980-57642018dn13-040008

14. Victor CR, Rippon I, Quinn C, et al. The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme. Aging Ment Health. 2021;25:1232-1238. doi: 10.1080/13607863.2020.1753014

15. Sallim AB, Sayampanathan AA, Cuttilan A, et al. Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. J Am Med Dir Assoc. 2015;16:1034-1041. doi: 10.1016/j.jamda.2015.09.007

16. Unpublished data from the 2015, 2016 2017, 2020, and 2021 Behavioral Risk Factor Surveillance System survey, analyzed by and provided to the Alzheimer’s Association by the Alzheimer’s Disease and Healthy Aging Program (AD+HP), Centers for Disease Control and Prevention (CDC).

17. Stall NM, Kim SJ, Hardacre KA, et al. Association of informal caregiver distress with health outcomes of community-dwelling dementia care recipients: a systematic review. J Am Geriatr Soc. 2018;00:1-9. doi: 10.1111/jgs.15690

18. Lindeza P, Rodrigues M, Costa J, et al. Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care. 2020;bmjspcare-2020-002242. doi: 10.1136/bmjspcare-2020-002242

19. Lethin C, Guiteras AR, Zwakhalen S, et al. Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging and Ment Health. 2017; 21:1138-1146. doi: 10.1080/13607863.2016.1211621

20. Family Caregiver Alliance. Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers. Family Caregiver Alliance; 2006. Accessed May 16, 2023. www.caregiver.org/uploads/legacy/pdfs/Assessment_Toolkit_20060802.pdf

21. Zarit SH, Zarit JM. Instructions for the Burden Interview. Pennsylvania State University; 1987.

22. University of Wisconsin. Zarit Burden Interview: assessing caregiver burden. Accessed May 19, 2023. https://wai.wisc.edu/wp-content/uploads/sites/1129/2021/11/Zarit-Caregiver-Burden-Assessment-Instruments.pdf

23. Gallagher-Thompson D, Bilbrey AC, Apesoa-Varano EC, et al. Conceptual framework to guide intervention research across the trajectory of dementia caregiving. Gerontologist. 2020;60:S29-S40. doi: 10.1093/geront/gnz157

24. Queluz FNFR, Kervin E, Wozney L, et al. Understanding the needs of caregivers of persons with dementia: a scoping review. Int Psychogeriatr. 2020;32:35-52. doi: 10.1017/S1041610219000243

25. McCabe M, You E, Tatangelo G. Hearing their voice: a systematic review of dementia family caregivers’ needs. Gerontologist. 2016;56:e70-e88. doi: 10.1093/geront/gnw07

26. Zwaanswijk M, Peeters JM, van Beek AP, et al. Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey. Open Nurs J. 2013;7:6-13. doi: 10.2174/1874434601307010006

27. Jennings LA, Palimaru A, Corona MG, et al. Patient and caregiver goals for dementia care. Qual Life Res. 2017;26:685-693. doi: 10.1007/s11136-016-1471-7

28. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11:217-228. doi: 10.31887/DCNS.2009.11.2/hbrodaty

29. Rote SM, Angel JL, Moon H, et al. Caregiving across diverse populations: new evidence from the national study of caregiving and Hispanic EPESE. Innovation in Aging. 2019;3:1-11. doi: 10.1093/geroni/igz033

30. Alzheimer’s Association. 2021 Alzheimer’s Disease facts and figures. Special report—race, ethnicity, and Alzheimer’s in America. Alzheimers Dement. 2021;17:70-104. doi: 10.1002/alz.12328

31. Swartz K, Collins LG. Caregiver care. Am Fam Physician. 2019;99:699-706.

32. Cheng ST, Au A, Losada A, et al. Psychological interventions for dementia caregivers: what we have achieved, what we have learned. Curr Psychiatry Rep. 2019;21:59. doi: 10.1007/s11920-019-1045-9

33. Jennings LA, Reuben DB, Everston LC, et al. Unmet needs of caregivers of patients referred to a dementia care program. J Am Geriatr Soc. 2015;63:282-289. doi: 10.1111/jgs.13251

34. Soong A, Au ST, Kyaw BM, et al. Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review. BMC Geriatrics. 2020;20:61. doi: 10.1186/s12877-020-1454-y

35. Cheng S-T, Zhang F. A comprehensive meta-review of systematic reviews and meta-analyses on nonpharmacological interventions for informal dementia caregivers. BMC Geriatrics. 2020;20:137. doi: 10.1186/s12877-020-01547-2

36. Wiegelmann H, Speller S, Verhaert LM, et al. Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia—a systematic literature review. BMC Geriatrics. 2021;21:94. doi: 10.1186/s12877-021-02020-4

37. Nguyen SA, Oughli HA, Lavretsky H. Complementary and integrative medicine for neurocognitive disorders and caregiver health. Current Psychiatry Reports. 2022;24:469-480. doi: 10.1007/s11920-022-01355-y

38. Gibson A, Holmes SD, Fields NL, et al. Providing care for persons with dementia in rural communities: informal caregivers’ perceptions of supports and services. J Gerontol Soc Work. 2019;62:630-648. doi: 10.1080/01634372.2019.1636332

39. Leng M, Zhao Y, Xiau H, et al. Internet-based supportive interventions for family caregivers of people with dementia: systematic review and meta-analysis. J Med Internet Res. 2020;22:e19468. doi: 10.2196/19468

40. Ruggiano N, Brown EL, Li J, et al. Rural dementia caregivers and technology. What is the evidence? Res Gerontol Nurs. 2018;11:216-224. doi: 10.3928/19404921-20180628-04

41. Shuffler J, Lee K, Fields, et al. Challenges experienced by rural informal caregivers of older adults in the United States: a scoping review. J Evid Based Soc Work. Published online 24 February 24, 2023. doi:10.1080/26408066.2023.2183102

42. Hughes MC, Liu Y, Baumbach A. Impact of COVID-19 on the health and well-being of informal caregivers of people with dementia: a rapid systematic review. Gerontol Geriatric Med. 2021;7:1-8. doi: 10.1177/2333721421102164

43. Paplickar A, Rajagopalan J, Alladi S. Care for dementia patients and caregivers amid COVID-19 pandemic. Cereb Circ Cogn Behav. 2022;3:100040. doi: 10.1016/j.cccb.2022.100040

It is estimated that more than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.¹ As individuals with dementia progressively decline, they require increased assistance with activities of daily living (ADLs, such as bathing and dressing) and instrumental activities of daily living (IADLs, such as paying bills and using transportation). Most of this assistance comes from informal caregiving provided by family members and friends.

Caregiver burden can be defined as “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.”² Caregiver stress has been found to be higher for dementia caregiving than other types of caregiving.³ In particular, caring for someone with greater behavioral and psychological symptoms of dementia (BPSDs) has been associated with higher caregiver burden.^4-7

Beyond the subjective burden of caregiving, there are other potential negative consequences for dementia caregivers (see TABLE 1^8-14 and TABLE 2^15,16). In addition, caregiver distress is related to a number of care recipient outcomes, including earlier institutionalization, more hospitalizations, more BPSDs, poorer quality of life, and greater likelihood of experiencing elder abuse.¹⁷

Assessment, reassessment are key to meeting needs

Numerous factors can foster caregiver well-being, including feelings of accomplishment and contribution, a strengthening of the relationship with the care recipient, and feeling supported by friends, family, and formal care systems.^18,19 Family physicians can play an important role by assessing and supporting patients with dementia and their caregivers. Ideally, the individual with dementia and the caregiver will be assessed both together and separately.

Caregiver distress is related to care recipient outcomes, such as earlier institutionalization, more hospitalizations, and poorer quality of life.

A thorough assessment includes gathering information about the context and quality of the caregiving relationship; caregiver perception of the care recipient’s health and functional status; caregiver values and preferences; caregiver well-being (including mental health assessment); caregiver skills, abilities, and knowledge about caregiving; and positive and negative consequences of caregiving.²⁰ Caregiver needs—including informational, care support, emotional, physical, and social needs—also should be assessed.

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