Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study

PurposeTo examine caregivers’ health-related quality of life (HRQoL) and well-being during the first 3 years after their family member’s Alzheimer’s disease (AD) diagnosis and assessed the relationship between caregivers’ HRQoL, well-being, and the severity of AD. Further, to compare of caregivers’ HRQoL to general population.MethodsLongitudinal design (36 months) after AD diagnosis of 236 caregiver–patient dyads. Linear regression was used to assess age- and gender-adjusted association between repeated measurements of caregivers’ HRQoL and the severity of AD. For comparison with general population, the National Health 2011 Health Examination Survey data was utilized.ResultsCaregivers had significantly lower HRQoL than age- and gender-standardized counterparts. Severity of AD was significantly (p < 0.05) associated with the mobility and depression dimensions of caregiver’s HRQoL but not with the total HRQoL index score.ConclusionsCaregivers’ HRQoL seems to deteriorate earlier than previously noted. The severity of AD has not that great impact on caregiver’s HRQoL as assumed.

[1]  Bruno Vellas,et al.  Suitability of the Clinical Dementia Rating-Sum of Boxes as a single primary endpoint for Alzheimer’s disease trials , 2011, Alzheimer's & Dementia.

[2]  Janet B W Williams,et al.  Diagnostic and Statistical Manual of Mental Disorders , 2013 .

[3]  Christopher McCabe,et al.  Visual Analogue Scales: do they have a role in the measurement of preferences for health states? , 2004 .

[4]  Dc Washington.  Diagnostic and Statistical Manual of Mental Disorders, 4th Ed. , 1994 .

[5]  W. Chan,et al.  Validation of the new interpretive guidelines for the clinical dementia rating scale sum of boxes score in the national Alzheimer's coordinating center database. , 2010, Archives of neurology.

[6]  H. Sintonen,et al.  Estimating the minimum important change in the 15D scores , 2015, Quality of Life Research.

[7]  Pierre-Marie Preux,et al.  Dementia patients caregivers quality of life: the PIXEL study , 2006, International journal of geriatric psychiatry.

[8]  J. Markowitz,et al.  Health-Related Quality of Life for Caregivers of Patients With Alzheimer Disease , 2003, Alzheimer disease and associated disorders.

[9]  I. Hallberg,et al.  Older caregivers' coping strategies and sense of coherence in relation to quality of life. , 2007, Journal of advanced nursing.

[10]  S. Saxena,et al.  The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. , 1995, Social science & medicine.

[11]  E. Papastavrou,et al.  Factors associated with quality of life among family members of patients with dementia in Cyprus , 2013, International Psychogeriatrics.

[12]  M. Folstein,et al.  Clinical diagnosis of Alzheimer's disease , 1984, Neurology.

[13]  P. Serrano-Aguilar,et al.  Impact on Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Individuals with Alzheimer’s Disease , 2006, Neuroepidemiology.

[14]  Helen D Davies,et al.  The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships , 2010, International Psychogeriatrics.

[15]  V. Arnao,et al.  Sleep quality in caregivers of patients with Alzheimer's disease and Parkinson's disease and its relationship to quality of life , 2012, International Psychogeriatrics.

[16]  D. Coakley,et al.  Individual Quality of Life Factors Distinguishing Low-Burden and High-Burden Caregivers of Dementia Patients , 2002, Dementia and Geriatric Cognitive Disorders.

[17]  F. Tripodi,et al.  The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse , 2007, International journal of clinical practice.

[18]  E. Walker,et al.  Diagnostic and Statistical Manual of Mental Disorders , 2013 .

[19]  Josep Garre-Olmo,et al.  Discrepancies regarding the quality of life of patients with Alzheimer's disease: a three-year longitudinal study. , 2014, Journal of Alzheimer's disease : JAD.

[20]  A. Koivisto,et al.  Decreasing sense of coherence and its determinants in spousal caregivers of persons with mild Alzheimer's disease in three year follow-up: ALSOVA study , 2014, International Psychogeriatrics.

[21]  Harri Sintonen,et al.  The 15-D Measure of Health Related Quality of Life . II Feasibility , Reliability and Validity of its Valuation System , 1995 .

[22]  Wen-Chun Hsu,et al.  Family caregivers’ sleep disturbance and its associations with multilevel stressors when caring for patients with dementia , 2014, Aging & mental health.

[23]  B. L. Beattie,et al.  Predictors of patient self-ratings of quality of life in Alzheimer disease: cross-sectional results from the Canadian Alzheimer's Disease Quality of Life Study. , 2011, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[24]  J. Suvisaari,et al.  The health-related quality-of-life impact of chronic conditions varied with age in general population. , 2007, Journal of clinical epidemiology.

[25]  C. Bell,et al.  The Association Between Caregiver Burden and Caregiver Health-Related Quality of Life in Alzheimer Disease , 2001, Alzheimer disease and associated disorders.

[26]  H. Sintonen.  The 15D instrument of health-related quality of life: properties and applications , 2001, Annals of medicine.

[27]  M. Olde Rikkert,et al.  Quality of Life and Burden of Spouses of Alzheimer Disease Patients , 2009, Alzheimer disease and associated disorders.

[28]  H. Miyaoka,et al.  Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life , 2011, Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society.

[29]  D. Feeny,et al.  Do They Have a Role in the Measurement of Preferences for Health States , 2001 .

[30]  W. Haley,et al.  Perceptions of Illness, Coping, and Well-being in Persons With Mild Cognitive Impairment and Their Care Partners , 2008, Alzheimer disease and associated disorders.

[31]  H. Soininen,et al.  Cognitive and Neuropsychiatric Symptom Differences in Early Stages of Alzheimer's Disease: Kuopio ALSOVA Study , 2012, Dementia and Geriatric Cognitive Disorders Extra.

[32]  John C. Morris,et al.  Progression of Alzheimer’s disease as measured by Clinical Dementia Rating Sum of Boxes scores , 2013, Alzheimer's & Dementia.

[33]  M. Mega,et al.  The Neuropsychiatric Inventory , 1994, Neurology.

[34]  Jared M. Bruce,et al.  Burden among Spousal and Child Caregivers of Patients with Mild Cognitive Impairment , 2008, Dementia and Geriatric Cognitive Disorders.

[35]  M. Vitiello,et al.  Insomnia In Caregivers Of Persons With Dementia: Who Is At Risk And What Can Be Done About It? , 2009, Sleep medicine clinics.

[36]  P. Vitaliano,et al.  Is caregiving hazardous to one's physical health? A meta-analysis. , 2003, Psychological bulletin.

[37]  J. Vila,et al.  Health-Related Quality-of-Life of Care-Givers as a Predictor of Nursing-Home Placement of Patients With Dementia , 2005, Alzheimer disease and associated disorders.

[38]  Knut Engedal,et al.  The Quality of Life of People with Dementia and Their Family Carers , 2012, Dementia and Geriatric Cognitive Disorders.

[39]  H. Miyaoka,et al.  The experience of burnout among home caregivers of patients with dementia: relations to depression and quality of life. , 2009, Archives of gerontology and geriatrics.

[40]  T. Pirttilä,et al.  Caregiver depression is associated with a low sense of coherence and health-related quality of life , 2009, Aging & mental health.

[41]  R. Sulkava,et al.  Spouse Caregivers' Perceptions of Influence of Dementia on Marriage , 2002, International Psychogeriatrics.

[42]  Domján Andrea,et al.  World Medical Association Declaration of Helsinki (WMA) - Ethical principles for medical research involving human subjects , 2014 .

[43]  J. Darbà,et al.  Assessment of potential measures in models of progression in Alzheimer disease , 2010, Neurology.

[44]  Chunbo Li,et al.  Self-Efficacy Partially Mediates between Social Support and Health-Related Quality of Life in Family Caregivers for Dementia Patients in Shanghai , 2013, Dementia and Geriatric Cognitive Disorders.

[45]  P. Sachdev,et al.  Correlates of psychological distress in study partners of older people with and without mild cognitive impairment (MCI) – the Sydney Memory and Ageing Study , 2014, Aging & mental health.

[46]  J. Swindle,et al.  A mixed methods study of hope, transitions, and quality of life in family caregivers of persons with Alzheimer's disease , 2011, BMC geriatrics.

[47]  N. Keiding,et al.  A three-year follow-up on the efficacy of psychosocial interventions for patients with mild dementia and their caregivers: the multicentre, rater-blinded, randomised Danish Alzheimer Intervention Study (DAISY) , 2013, BMJ Open.

[48]  M. Sano,et al.  An Inventory to Assess Activities of Daily Living for Clinical Trials in Alzheimer's Disease , 1997, Alzheimer disease and associated disorders.

[49]  S. Folstein,et al.  "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. , 1975, Journal of psychiatric research.

[50]  J. Arango-Lasprilla,et al.  Connecting health-related quality of life and mental health in dementia caregivers from Colombia, South America. , 2014, Journal of Alzheimer's disease : JAD.