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Family quality of life in dementia: a qualitative approach to family-identified care priorities

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Abstract

Objective

To characterize factors contributing to quality of life (QOL) in families providing care to people with dementia.

Background

Assessing QOL in dementia has proved difficult. Individuals with dementia often possess limited insight, leading them to self-rate QOL differently from those who provide care for them. A majority of people with dementia receive care in the context of family units, but measures of whole-family QOL have not been previously described in the literature on dementia. The concept of family quality of life (FQOL) was developed and validated among families caring for children with developmental disabilities. FQOL measures have the potential to improve determinations of effectiveness in dementia care.

Design/Methods

Fifty-four questionnaires requesting information on priorities for care were collected from families of patients obtaining care at an academic dementia clinic. Forms were completed by family members, patients, or both. The mean age of the patients was 73.6 years; 61% were women. Qualitative analyses of the responses were conducted by two evaluators. Comments from 54 questionnaires were assigned by consensus to five categories based on domains validated for FQOL in families of individuals with developmental disabilities. Eleven cases from the 54 were rated by both evaluators to assess inter-rater reliability.

Results

Five domains were identified as follows: (1) family interactions, (2) direct care/activities of daily living support, (3) emotional/behavioral well-being, (4) physical and cognitive well-being, and (5) disability-related support/medical care. Not surprisingly for clinic encounters, medical care requests and inquiries were expressed by a high proportion of families. Concerns about physical and cognitive well-being were expressed nearly as often. Issues regarding family interactions and emotional well-being were less frequently raised.

Conclusions/Relevance

A FQOL model developed for developmental disability provided useful information for qualitative characterization of priorities among families receiving dementia care. Ongoing research will be useful to explore the validity and utility of the FQOL concept in dementia, especially in domains not well addressed by the current questionnaire.

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References

  1. Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68, 1069–1083.

    Article  Google Scholar 

  2. Jonsson, L., Andreasen, N., Kilander, L., et al. (2006). Patient- and proxy-reported utility in Alzheimer’s disease using the EuroQoL. Alzheimer Disease and Associated Disorders, 20, 49–55.

    Article  PubMed  Google Scholar 

  3. Karlawish, J. H., Zbrozek, A., Kinosian, B., Gregory, A., Ferguson, A., Low, D. V., et al. (2008). Caregivers’ assessments of preference-based quality of life in Alzheimer’s disease. Alzheimer’s & Dementia, 4, 203–211.

    Article  Google Scholar 

  4. Neumann, P. J. (2005). Health utilities in Alzheimer’s disease and implications for cost-effectiveness analysis. Pharmacoeconomics, 23, 437–541.

    Article  Google Scholar 

  5. Park, J., Hoffman, L., Marquis, J., Turnbull, L., Poston, D. J., Marquis, J., et al. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47, 367–384.

    Article  PubMed  CAS  Google Scholar 

  6. Patterson, M. B., Whitehouse, P. J., Edland, S. D., Sami, S. A., Sano, M., Smyth, K., et al. (2006). ADCS prevention instrument project: Quality of life assessment (QOL). Alzheimer’s Disease & Associated Disorders, 20(4 Suppl 3), S179–S190.

    Article  Google Scholar 

  7. Patton, M. Q. (1990). Qualitative evaluation and research methods (2nd ed.). CA: Sage Publications.

    Google Scholar 

  8. Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328.

    Article  PubMed  Google Scholar 

  9. Ready, R. E., & Ott, B. R. (2003). Quality of life measures for dementia. Health and Quality of Life Outcomes, 1, 11.

    Article  PubMed  Google Scholar 

  10. Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. CA: Sage Publications.

    Google Scholar 

  11. Scuffham, P. A., Whitty, J. A., Mitchell, A., & Viney, R. (2008). The use of QALY weights for QALY calculations: A review of industry submissions requesting listing on the Australian Pharmaceutical Benefits Scheme 2002–4. Pharmacoeconomics, 26(4), 297–310.

    Article  PubMed  Google Scholar 

  12. Starkstein, S. E., Jorge, R., Mizrahi, R., & Robinson, R. G. (2006). A diagnostic formulation for anosognosia in Alzheimer’s disease. Journal of Neurology, Neurosurgery and Psychiatry, 77, 719–725.

    Article  CAS  Google Scholar 

  13. Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(10), 777–783.

    Article  PubMed  CAS  Google Scholar 

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Authors and Affiliations

  1. Department of Neurology, University of Virginia, Charlottesville, VA, 22908, USA

    Jamie K. Ducharme & David S. Geldmacher

Authors
  1. Jamie K. Ducharme
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  2. David S. Geldmacher
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Correspondence to David S. Geldmacher.

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Ducharme, J.K., Geldmacher, D.S. Family quality of life in dementia: a qualitative approach to family-identified care priorities. Qual Life Res 20, 1331–1335 (2011). https://doi.org/10.1007/s11136-011-9852-4

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  • DOI: https://doi.org/10.1007/s11136-011-9852-4

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