Quality of Life and Caregiver Burden of Alzheimer’s Disease Among Community Dwelling Patients in Europe: Variation by Disease Severity and Progression

Background: Alzheimer’s disease (AD) is a significant burden on patients and caregivers. How this burden increases as disease progresses has not been well researched. Objective: To assess the association of caregiver burden and quality of life with Alzheimer’s disease severity and disease progression in community-dwelling patients in Germany, Spain, and the UK. Methods: This was a prospective observational longitudinal study of mild-to-moderate AD patients (assessed by Mini-Mental State Examination, MMSE), and their caregivers. The humanistic burden was assessed using these instruments: [Rapid Assessment of Physical Activity (RAPA), EuroQoL-5-Dimension Level (EQ-5D-5L)] and caregiver-reported [Dependence Scale (DS), EQ-5D-5L, Zarit Burden Interview (ZBI)]. Caregiver-reported healthcare resource use was assessed using the Resource Use in Dementia (RUD) and ad-hoc questions. Results: Of 616 patients recruited, 338 and 99 were followed-up at 12 and 18 months, respectively. The caregiver-reported EQ-5D-5L scores of patients’ health-related quality of life (HRQoL) showed a negative trend over time (baseline: 0.76; 18 months: 0.67) while patient-reported HRQoL remained at 0.85. DS scores tended to worsen. Disease progression was an independent predictor of HRQoL and increased dependence. Mean ZBI score increased over time reflecting an increase in caregiver burden; MMSE being an independent predictor for caregiver burden. Patient resource utilization and caregiver time for caregiving tended to increase over time. Conclusion: We found significant association between disease progression and caregiver and patient burden. Independently, both disease-specific outcomes and disease burden measures increased over time, but as disease progresses, we also found incremental burden associated with it.

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Cross-cultural adaptation of the German version of the Quality of Life in Alzheimer's Disease scale - Nursing Home version (QoL-AD NH)

International Psychogeriatrics ◽

10.1017/s1041610216000107 ◽

2016 ◽

Vol 28 (8) ◽

pp. 1399-1400 ◽

Cited By ~ 6

Author(s):

Martin Nikolaus Dichter ◽

Eva-Maria Wolschon ◽

Gabriele Meyer ◽

Sascha Köpke

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Community Dwelling ◽

Positive Effects ◽

People With Dementia ◽

The Us ◽

Dementia Research ◽

Almost All

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).

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Feasibility and Impact of a Multicomponent Exercise Intervention in Patients With Alzheimer’s Disease: A Pilot Study

American Journal of Alzheimer s Disease & Other Dementias® ◽

10.1177/1533317518813555 ◽

2018 ◽

Vol 34 (2) ◽

pp. 95-103 ◽

Cited By ~ 3

Author(s):

Flávia Borges-Machado ◽

Óscar Ribeiro ◽

Arnaldina Sampaio ◽

Inês Marques-Aleixo ◽

Joana Meireles ◽

...

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Exercise Intervention ◽

Exercise Program ◽

Community Dwelling ◽

Disease Assessment ◽

Muscle Strengthening ◽

Quasi Experimental

This quasi-experimental, nonrandomized study examined the feasibility and impact of a multicomponent (MT) intervention on 7 community-dwelling individuals diagnosed with probable Alzheimer’s disease (AD) at mild to moderate stage. During 6 months, patients with AD and their caregivers were submitted to a biweekly exercise program, including muscle strengthening, aerobics, balance, and postural exercises. The following tests were used: Senior Fitness Test and Incremental Treadmill Test, Disability Assessment for Dementia Scale, Alzheimer Disease Assessment Scale–Cognitive, and Quality of Life–Alzheimer’s. Attendance and retention mean rates were high (86% and 78%, respectively). No adverse events occurred. Results revealed a significant beneficial effect on cardiorespiratory fitness ( P = .028), upper ( P = .018) and lower ( P = .026) body muscle strength, agility ( P = .018), and ability to perform daily activities ( P = .018). Data suggest that a biweekly MT intervention is feasible to conduct in patients with AD. Findings also suggest a potential positive effect on mitigating cognitive decline and in positively influencing quality of life.

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Quality of life (QoL) in community-dwelling and institutionalized Alzheimer's disease (AD) patients

Archives of Gerontology and Geriatrics ◽

10.1016/j.archger.2013.04.013 ◽

2013 ◽

Vol 57 (3) ◽

pp. 257-262 ◽

Cited By ~ 20

Author(s):

Beatriz León-Salas ◽

Javier Olazarán ◽

Isabel Cruz-Orduña ◽

Luis Agüera-Ortiz ◽

José Luis Dobato ◽

...

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Community Dwelling

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Impact of Donepezil on Caregiving Burden for Patients With Alzheimer's Disease

International Psychogeriatrics ◽

10.1017/s1041610200006499 ◽

2000 ◽

Vol 12 (3) ◽

pp. 389-401 ◽

Cited By ~ 34

Author(s):

Howard M. Fillit ◽

Elane M. Gutterman ◽

Rachelle L. Brooks

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Caregiver Burden ◽

Nationwide Survey ◽

Well Being ◽

Measured Time ◽

Burden Scale ◽

Selection Factors

Comprehensive Alzheimer's disease (AD) treatment should address caregiver well-being. We predicted that caregiver burden would be lower among caregivers of AD patients who received donepezil relative to caregivers of patients not treated with donepezil. A self-administered, nationwide survey of AD caregivers was used to match caregivers of patients treated with donepezil (n = 274) to caregivers of patients not treated with donepezil (n = 274). The Caregiver Burden Scale measured time demands and distress linked to commonly performed caregiving tasks. Respondents were three-quarters female, with an average age of 60 years. Results demonstrated that donepezil caregivers reported significantly lower scores on difficulty of caregiving. This difference remained when statistical controls for multiple patient and caregiver variables were imposed. However, selection factors must be recognized as a possible explanation for differences. The groups reported no difference on the time-demand subscale. In conclusion, better management of AD symptoms through donepezil treatment may reduce the burden of caregiving, providing physicians with a pharmacologic approach to improving quality of life for AD patients and their families.

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Health-related quality of life in community dwelling patients with mild-to-moderate Alzheimer's disease

European Geriatric Medicine ◽

10.1016/j.eurger.2017.01.008 ◽

2017 ◽

Vol 8 (2) ◽

pp. 158-163

Author(s):

A. Raggi ◽

D. Tasca ◽

P.M.D. Lupica Capra ◽

S. Panerai ◽

W. Neri ◽

...

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Community Dwelling ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Disease Staging and Milestones

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/s031716710000559x ◽

2007 ◽

Vol 34 (S1) ◽

pp. S62-S66 ◽

Cited By ~ 1

Author(s):

Kiran Rabheru

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Clinical Trials ◽

Targeted Therapy ◽

Caregiver Burden ◽

Surrogate Markers ◽

Global Function ◽

Disease Staging

This new section to the guidelines was added due to the recognition that clinical milestones are useful indices of the progression of dementia in patients with Alzheimer's disease and could help in the development of stage-specific targeted therapy. This review specifically looks at clinical milestones that could be used in clinical trials, such as global function, function, behaviour, caregiver burden, and quality of life milestones. It also addresses the possible use of biological and surrogate markers for use as milestones - which may eventually replace clinical milestones. It concludes that current definitions of dementia must be broadened beyond cognition alone to include some of the domains listed.

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Caregiver rating bias in mild cognitive impairment and mild Alzheimer's disease: impact of caregiver burden and depression on dyadic rating discrepancy across domains

International Psychogeriatrics ◽

10.1017/s1041610213000562 ◽

2013 ◽

Vol 25 (8) ◽

pp. 1345-1355 ◽

Cited By ~ 34

Author(s):

Livia Pfeifer ◽

Reinhard Drobetz ◽

Sonja Fankhauser ◽

Moyra E. Mortby ◽

Andreas Maercker ◽

...

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Caregiver Burden ◽

Depression Scale ◽

Caregiver Rating ◽

Rating Bias

ABSTRACTBackground: Caregivers of individuals with dementia are biased in their rating of mental health measures of the care receiver. This study examines caregiver burden and depression as predictors of this bias for mild cognitive impairment and mild Alzheimer's disease in different domains.Methods: The sample consisted of 202 persons: 60 with mild cognitive impairment, 41 with mild Alzheimer's disease, and 101 caregivers. Discrepancy scores were calculated by subtracting the mean caregiver score from the respective mean patient score on the following assessment instruments: the Geriatric Depression Scale, Apathy Evaluation Scale, Bayer-Activities of Daily Living Scale, and Quality of Life-AD scale. Caregiver burden and depression were assessed by the Zarit Burden Interview and the Center for Epidemiologic Studies Depression Scale.Results: Intraclass correlation coefficients were low for apathy (0.38), daily functioning (0.38), and quality of life (0.30) and moderate for depression (0.49). These domains showed negative rating discrepancies, which indicates caregiver rating bias for all four domains. Regression analyses revealed that caregiver burden significantly contributed to explaining these discrepancies in the domains apathy, daily functioning, and quality of life.Conclusion: Caregiver rating bias can be attributed to caregiver burden. When caregiver burden is present, data based on caregiver ratings should therefore be interpreted with caution.

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Quality of life in Alzheimer's disease: different factors associated with complementary ratings by patients and family carers

International Psychogeriatrics ◽

10.1017/s1041610211002493 ◽

2012 ◽

Vol 24 (5) ◽

pp. 708-721 ◽

Cited By ~ 48

Author(s):

Pascalle R. Bosboom ◽

Helman Alfonso ◽

Joanna Eaton ◽

Osvaldo P. Almeida

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Clinical Information ◽

Primary Outcome Measure ◽

Community Dwelling ◽

Family Carers ◽

Cross Sectional ◽

Factors Associated

ABSTRACTBackground: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer–carer perspective and carer–patient perspective.Methods: A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients’ self-reported QoL ratings and two types of carer-reported QoL ratings: carer–patient and carer–carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.Results: Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers’ QoL ratings.Conclusion: Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.

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New Ways to Approach Manifestations of Alzheimer's Disease and to Reduce Caregiver Burden

International Psychogeriatrics ◽

10.1017/s1041610296003158 ◽

1996 ◽

Vol 8 (S1) ◽

pp. 91-94 ◽

Cited By ~ 2

Author(s):

Jiska Cohen-Mansfield

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Cognitive Decline ◽

Caregiver Burden ◽

Routine Activities ◽

Affected Person ◽

And Behavior ◽

Financial Liability

Alzheimer's disease (AD) results in severe cognitive decline, deterioration in the ability to perform routine activities such as bathing or walking, and changes in affect and behavior. It severely diminishes the quality of life of the affected person and presents a colossal burden to caregivers and a tremendous financial liability to society. The impetus for research relates specifically to these burdens by testing new ways to approach the manifestations of the disease and effectively communicating these ways to caregivers.

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