Understanding and Measuring the Wellbeing of Carers of People With Dementia

Cunningham, Nicola; Cunningham, Tom; Roberston, Jane M

doi:10.1093/geront/gny018

Cited by 19 publications

(31 citation statements)

References 41 publications

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“…This inclusive conceptualisation of well-being is in line with the large variety of definitions (both conceptual and operational) in the literature, and with authors who have theorised that decreased well-being occurs when individuals are facing challenges that require additional adaptation and resources to meet 38. A recent systematic review of reviews illustrated that within the literature on caregivers of persons with dementia, well-being is most frequently operationalised as burden, depression, stress, quality of life, physical and mental health and the caregiver–recipient relationship 16. Based on their review, the authors suggested that quality of life can be considered one part of well-being, along with intrinsic feelings and emotions (positive mental attributes such as self-efficacy, negative mental attributes such as depression, subjective perceptions of one’s own health or well-being) and what they called ‘extrinsic factors’ (interactions with others, mental or physical health).…”

Section: Methods and Analysismentioning

confidence: 99%

“…Although there are also gratifying and positive aspects of caregiving for many caregivers of persons with dementia,15 they are often considered a vulnerable population due to the intensity of caring demands, risk of burden and other negative consequences. This perspective is reflected in the literature on caregiver well-being, which primarily focuses on deficits and how to ameliorate negative caregiver outcomes 16…”

Section: Introductionmentioning

confidence: 99%

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Protocol for a systematic review on interventions for caregivers of persons with mild cognitive impairment and early dementia: does early stage intervention improve caregiver well-being and ability to provide care?

et al. 2019

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IntroductionCaregivers of persons with dementia and mild cognitive impairment (MCI) are at risk of decreased well-being. While many interventions for caregivers exist, evidence is sparse regarding intervention timing and effectiveness at an early stage of cognitive decline. Our systematic review aims to answer the following questions: (1) Do interventions for caregivers of persons with early stage dementia or MCI affect their well-being and ability to provide care? (2) Are particular types of caregiver interventions most effective during early stage cognitive decline? (3) How does effectiveness differ when early and later interventions are directly compared? (4) Do effects of early stage caregiver intervention vary based on care recipient and caregiver characteristics (eg, sex, type of dementia)?Methods and analysisThe databases MEDLINE, EMBASE, PSYCINFO and CINAHL, as well as grey literature databases, will be searched for English language studies using search terms related to caregiver interventions and dementia/MCI. Abstracts and full texts will be screened by two independent reviewers; included studies must assess the effects of an intervention for caregivers of persons with early stage dementia or MCI on caregiver well-being or ability to provide care. Intervention, study and participant characteristics will be extracted by two independent reviewers, along with outcome data. Risk of bias will be assessed using the Cochrane risk of bias tool (for controlled trials with and without randomisation). Interventions will be grouped by type (eg, psychoeducational) and a narrative synthesis is planned due to expected heterogeneity, but a meta-analysis will be performed where possible. The Grading of Recommendations, Assessment, Development and Evaluations approach will be used to inform conclusions regarding the quality of evidence for each type of intervention.Ethics and disseminationFindings from this review will be disseminated via conferences and peer-reviewed publication, and a summary will be provided to the Alzheimer Society.PROSPERO registration numberCRD42018114960.

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Section: Methods and Analysismentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Protocol for a systematic review on interventions for caregivers of persons with mild cognitive impairment and early dementia: does early stage intervention improve caregiver well-being and ability to provide care?

et al. 2019

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“…Well-being in the context of dementia has been operationalized in various ways with no clear consensus on the definition (Cunningham et al, 2018, Tyack and Camic, 2017, Kaufmann and Engel, 2014). Several measures have been developed to capture an individual’s subjective experience of well-being in the general population, but in the dementia context researchers more often use measures of depressive symptoms and quality of life (QOL) separately or in combination with other measures to represent at least the physical and mental health aspects of well-being (Dawson et al, 2013, Stites et al, 2017).…”

Section: Defining Well-beingmentioning

confidence: 99%

“…In addition to depressive symptoms and quality of life, some researchers characterize care-related strain (i.e. caregiver burden, or the subjective strain experienced as a result of providing care) as a defining component of CPs’ well-being (Arthur et al, 2017, Cunningham et al, 2018). However, according to the Stress Process Model (SPM: the model used to guide this study), care-related strain, labeled “role overload” in the SPM, is defined as a primary stressor that is predictive of well-being (Pearlin et al, 1990, Judge et al, 2010).…”

Section: Stressors and Strainsmentioning

confidence: 99%

“…Dementia is often considered to be a threat to an individual’s well-being, whether that individual is the person who receives a dementia diagnosis (Stites et al, 2017, Orgeta et al,2015,Nagpal et al, 2014) or the family member who provides the majority of informal dementia care (Schulz et al, 2017, Cunningham et al, 2018). Multiple stressors and strains arising from the dementia context have been examined for their potential to threaten the well-being of either the person with dementia (PWD) or the family care partner (CP) (Buckley et al, 2012, Fauth et al, 2012, Judge et al, 2010).…”

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confidence: 99%

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Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners

Miller

Kaye

Lyons

et al. 2019

Int. Psychogeriatr.

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Background and Purpose: The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads. Methods: Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer’s Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). Results: In adjusted models, the PWD’s well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad’s relationship. The CP’s well-being was associated with significantly less care-related strain, and (for QOL scale) less relationship strain. Conclusions: Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad’s relationship quality.

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Scaling‐up an evidence‐based intervention for family carers of people with dementia: Current and future costs and outcomes

Knapp,

Lorenz‐Dant,

Walbaum

et al. 2024

Int J Geriat Psychiatry

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ObjectivesThe STrAtegies for RelaTives (START) intervention is effective and cost‐effective in supporting family carers of people with dementia. It is currently not available to all eligible carers in England. What would be the impacts on service costs and carer health‐related quality of life if START was provided to all eligible carers in England, currently and in future?MethodsEffectiveness and cost‐effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health‐related quality of life outcomes between 2015 (base year for projections) and 2040.ResultsScaling‐up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6 years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality‐adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883.ConclusionsScaling‐up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence‐based interventions that help them to maintain this role, such as START, should be available across the country.

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Understanding and Measuring the Wellbeing of Carers of People With Dementia

Cited by 19 publications

References 41 publications

Protocol for a systematic review on interventions for caregivers of persons with mild cognitive impairment and early dementia: does early stage intervention improve caregiver well-being and ability to provide care?

Protocol for a systematic review on interventions for caregivers of persons with mild cognitive impairment and early dementia: does early stage intervention improve caregiver well-being and ability to provide care?

Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners

Scaling‐up an evidence‐based intervention for family carers of people with dementia: Current and future costs and outcomes

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