Understanding the Quality of Life of Family Carers of People with Dementia: Development of a New Conceptual Framework

Overview

Journal Int J Geriatr Psychiatry

Specialties Geriatrics
Psychiatry

Date 2018 Sep 26

PMID 30251443

Citations 19

Authors

Stephanie Daley

Joanna Murray

Nicolas Farina

Thomas E Page

Anna Brown

Thurstine Basset

Gill Livingston

Ann Bowling

Martin Knapp

Sube Banerjee

Affiliations

Soon will be listed here.

Abstract

Background: Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.

Methods: We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study-specific advisory group of family carers.

Results: We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment.

Conclusions: For carers of people with dementia, the QOL construct was found to include condition-specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.

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References

Banerjee S, Murray J, Foley B, Atkins L, Schneider J, Mann A . Predictors of institutionalisation in people with dementia. J Neurol Neurosurg Psychiatry. 2003; 74(9):1315-6. PMC: 1738636. DOI: 10.1136/jnnp.74.9.1315. View

Perrin P, Morgan M, Aretouli E, Sutter M, Snipes D, Hoyos G . Connecting health-related quality of life and mental health in dementia caregivers from Colombia, South America. J Alzheimers Dis. 2013; 39(3):499-509. DOI: 10.3233/JAD-130764. View

Vellone E, Piras G, Talucci C, Cohen M . Quality of life for caregivers of people with Alzheimer's disease. J Adv Nurs. 2008; 61(2):222-31. DOI: 10.1111/j.1365-2648.2007.04494.x. View

Papastavrou E, Andreou P, Middleton N, Papacostas S, Georgiou I . Factors associated with quality of life among family members of patients with dementia in Cyprus. Int Psychogeriatr. 2013; 26(3):443-52. DOI: 10.1017/S104161021300224X. View

Bruvik F, Ulstein I, Ranhoff A, Engedal K . The quality of life of people with dementia and their family carers. Dement Geriatr Cogn Disord. 2012; 34(1):7-14. DOI: 10.1159/000341584. View

McLennon S, Habermann B, Rice M . Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia. Aging Ment Health. 2011; 15(4):522-30. DOI: 10.1080/13607863.2010.543656. View

Fauth E, Hess K, Piercy K, Norton M, Corcoran C, Rabins P . Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being. Aging Ment Health. 2012; 16(6):699-711. PMC: 3430821. DOI: 10.1080/13607863.2012.678482. View

Bell C, Araki S, Neumann P . The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 2001; 15(3):129-36. DOI: 10.1097/00002093-200107000-00004. View

Knapp M, Chua K, Broadbent M, Chang C, Fernandez J, Milea D . Predictors of care home and hospital admissions and their costs for older people with Alzheimer's disease: findings from a large London case register. BMJ Open. 2016; 6(11):e013591. PMC: 5128896. DOI: 10.1136/bmjopen-2016-013591. View

10.

Page T, Farina N, Brown A, Daley S, Bowling A, Basset T . Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review. BMJ Open. 2017; 7(3):e013611. PMC: 5372121. DOI: 10.1136/bmjopen-2016-013611. View

11.

Pearlin L, Mullan J, Semple S, Skaff M . Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990; 30(5):583-94. DOI: 10.1093/geront/30.5.583. View

12.

Jones C, Tudor Edwards R, Hounsome B . Qualitative exploration of the suitability of capability based instruments to measure quality of life in family carers of people with dementia. ISRN Family Med. 2014; 2014:919613. PMC: 4041269. DOI: 10.1155/2014/919613. View

13.

Wimo A, Jonsson L, Bond J, Prince M, Winblad B . The worldwide economic impact of dementia 2010. Alzheimers Dement. 2013; 9(1):1-11.e3. DOI: 10.1016/j.jalz.2012.11.006. View

14.

Bruce D, Paley G, Nichols P, Roberts D, Underwood P, Schaper F . Physical disability contributes to caregiver stress in dementia caregivers. J Gerontol A Biol Sci Med Sci. 2005; 60(3):345-9. DOI: 10.1093/gerona/60.3.345. View

15.

Vellone E, Piras G, Venturini G, Alvaro R, Cohen M . The experience of quality of life for caregivers of people with Alzheimer's disease living in Sardinia, Italy. J Transcult Nurs. 2011; 23(1):46-55. DOI: 10.1177/1043659611414199. View

16.

Daley S, Murray J, Farina N, Page T, Brown A, Basset T . Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework. Int J Geriatr Psychiatry. 2018; 34(1):79-86. PMC: 6586036. DOI: 10.1002/gps.4990. View

17.

Coen R, OBoyle C, Coakley D, Lawlor B . Dementia carer education and patient behaviour disturbance. Int J Geriatr Psychiatry. 1999; 14(4):302-6. View

18.

Chari A, Engberg J, Ray K, Mehrotra A . The opportunity costs of informal elder-care in the United States: new estimates from the American Time Use Survey. Health Serv Res. 2014; 50(3):871-82. PMC: 4450934. DOI: 10.1111/1475-6773.12238. View

19.

Farina N, Page T, Daley S, Brown A, Bowling A, Basset T . Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimers Dement. 2017; 13(5):572-581. DOI: 10.1016/j.jalz.2016.12.010. View