Objective. To understand who dementia patients identify as their family and how dementia affects family life. Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life. Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs. Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response. Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia. 1. Introduction Alzheimer’s disease (AD) and related dementias affect an individuals’ quality of life (QOL) in profound ways. QOL has been identified as a primary goal of dementia treatment [1, 2]. For instance, the International Working Group for the Harmonization of Dementia Drug Guidelines recommended that QOL be included as an outcome measure in dementia clinical trials [3]. The value of QOL measurement lies in its ability to capture potential benefits and harms of treatment not detected by typical patient-oriented performance outcomes, such as cognitive tests. Unfortunately, the neurological deficits associated with a dementing disease often make measurement of patient QOL difficult. Anosognosia, an organically mediated unawareness of the impairments, is a frequent occurrence in the disease, affecting up to 50% of individuals with mild to moderate AD [4]. This lack of insight may limit the reliability of affected individuals’ assessment of their QOL [5]. Concurrently, proxy’s attributions of the affected individual’s QOL are often quite different from the affected person and rated significantly lower [6, 7]. These discrepancies may help explain the lack of
References
[1]
C. P. Ferri, M. Prince, C. Brayne et al., “Global prevalence of dementia: a Delphi consensus study,” The Lancet, vol. 366, no. 9503, pp. 2112–2117, 2005.
[2]
P. J. Whitehouse and P. V. Rabins, “Quality of life and dementia,” Alzheimer Disease and Associated Disorders, vol. 6, no. 3, pp. 135–137, 1992.
[3]
J. L. Mack and P. J. Whitehouse, “Quality of life in dementia: state of the art-report of the international working group for harmonization of dementia drug guidelines and the Alzheimer's society satellite meeting,” Alzheimer Disease and Associated Disorders, vol. 15, no. 2, pp. 69–71, 2001.
[4]
S. E. Starkstein, R. Jorge, R. Mizrahi, and R. G. Robinson, “A diagnostic formulation for anosognosia in Alzheimer's disease,” Journal of Neurology, Neurosurgery and Psychiatry, vol. 77, no. 6, pp. 719–725, 2006.
[5]
R. E. Ready and B. R. Ott, “Quality of life measures for dementia,” Health and Quality of Life Outcomes, vol. 1, article 11, 2003.
[6]
L. J？nsson, N. Andreasen, L. Kilander et al., “Patient- and proxy-reported utility in Alzheimer disease using the EuroQoL,” Alzheimer Disease and Associated Disorders, vol. 20, no. 1, pp. 49–55, 2006.
[7]
J. H. Karlawish, A. Zbrozek, B. Kinosian et al., “Caregivers' assessments of preference-based quality of life in Alzheimer's disease,” Alzheimer's and Dementia, vol. 4, no. 3, pp. 203–211, 2008.
[8]
G. Naglie, “Quality of life in dementia,” Canadian Journal of Neurological Sciences, vol. 34, no. 1, pp. S57–S61, 2007.
[9]
P. A. Scuffham, J. A. Whitty, A. Mitchell, and R. Viney, “The use of QALY weights for QALY calculations: a review of industry submissions requesting listing on the Australian Pharmaceutical Benefits Scheme 2002-4,” PharmacoEconomics, vol. 26, no. 4, pp. 297–310, 2008.
[10]
P. J. Neumann, “Health utilities in Alzheimer's disease and implications for cost-effectiveness analysis,” PharmacoEconomics, vol. 23, no. 6, pp. 537–541, 2005.
[11]
M. M. Friedman, V. R. Bowden, and E. G. Jones, Family Nursing: Research, Theory, and Practice, Prentice Hall, Upper Saddle River, NJ, USA, 5th edition, 2003.
[12]
L. Pearlin, H. Turner, and S. Semple, “Coping and the mediation of caregiver stress,” in Alzheimer’s Disease Treatment and Family Stress, E. Light and B. Lebowitz, Eds., pp. 198–217, DHHS, Rockville, Md, USA, 1989.
[13]
Lifespan Respite: National Respite Coalition, 2010, http://chtop.org/ARCH/ARCH-National-Respite-Coalition.html.
[14]
Family Caregiver Alliance, 2010, http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2380.
[15]
D. Poston, A. Turnbull, J. Park, H. Mannan, J. Marquis, and M. Wang, “Family quality of life: a qualitative inquiry,” Mental Retardation, vol. 41, no. 5, pp. 313–392, 2003.
[16]
J. A. Summers, D. J. Poston, A. P. Turnbull et al., “Conceptualizing and measuring family quality of life,” Journal of Intellectual Disability Research, vol. 49, no. 10, pp. 777–783, 2005.
[17]
J. K. Ducharme and D. S. Geldmacher, “Family quality of life in dementia: a qualitative approach to family-identified care priorities,” Quality of Life Research, vol. 20, no. 8, pp. 1331–1335, 2011.
[18]
D. S. Knopman, S. T. DeKosky, J. L. Cummings et al., “Practice parameter: diagnosis of dementia (an evidence-based review): report of the quality standards subcommittee of the american academy of neurology,” Neurology, vol. 56, no. 9, pp. 1143–1153, 2001.
[19]
J. Lofland and L. H. Lofland, Analyzing Social Settings: A Guide to Qualitative Observation and Analysis, Wadsworth Publishing, Belmont, Calif, USA, 3rd edition, 1995.
[20]
B. E. Harrison, G.-R. Son, J. Kim, and A. L. Whall, “Preserved implicit memory in dementia: a potential model for care,” American Journal of Alzheimer's Disease and other Dementias, vol. 22, no. 4, pp. 286–293, 2007.
