A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia

Clare, Linda; Wu, Yu‐Tzu; Quinn, Catherine; Jones, Ian Rees; Chapot, Victor; Nelis, Sharon M.; Martyr, Anthony; Litherland, Rachael; Pickett, James; Hindle, John V.; Jones, Roy; Knapp, Martín; Kopelman, Michael D.; Morris, Robin G.; Rusted, Jennifer; Thom, Jeanette M.; Lamont, Ruth A.; Henderson, Catherine; Rippon, Isla; Hillman, Alexandra; Matthews, Fiona E.

doi:10.1097/wad.0000000000000285

Cited by 41 publications

(38 citation statements)

References 47 publications

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“…Prior findings suggest that loneliness may have an influence on caregiver well-being. We identified loneliness as one of the psychological factors significantly linked with 'living well' in a comprehensive model examining the ability of caregivers of people with dementia to live well (a composite measure of life satisfaction, quality of life and well-being) (Clare et al, 2019). An earlier study of 49 caregivers indicated that caregivers of people with Alzheimer's disease reported greater loneliness and depression in comparison to non-caregivers and that loneliness was predictive of depression (Beeson, 2003).…”

Section: Background: Loneliness and Family Caregivingmentioning

confidence: 99%

“…Loneliness has been linked to poor well-being as well as depression, anxiety and mental health problems (Cacioppo, Hawkley, & Thisted, 2010;Courtin & Knapp, 2017), and is a potential risk factor for the development of poorer physical health outcomes (Valtorta, Kanaan, Gilbody, Ronzi, & Hanratty, 2016) and mortality (Holt-Lunstad, Smith, Baker, Harris, & Stephenson, 2015). Although loneliness has been explored in a range of different populations, there are only a handful of studies focused on family caregivers (Chukwuorji, Amazue, & Ekeh, 2017;Ekwall, Sivberg, & Hallberg, 2005;Jones & Peters, 1992;McRae et al, 2009;Vasileiou et al, 2017) and few of these have examined loneliness in caregivers of people with dementia (Beeson, 2003;Beeson, Horton-Deutsch, Farran, & Neundorfer, 2000;Clare et al, 2019;Jaremka et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

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The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

Victor

Rippon

Quinn

et al. 2020

Aging & Mental Health

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Objectives: To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness. Methods: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness. Results: Almost half, 43.7%, of caregivers reported moderate loneliness and 17.7% reported severe loneliness. Greater social isolation and increased caregiving stress were linked with both moderate and severe loneliness. Better quality of relationship with the person with dementia along with increased levels of well-being and life satisfaction were associated with a lower relative risk of reporting both moderate and severe loneliness. Discussion: This study examines the prevalence and predictors of loneliness in a large sample of family caregivers of people with dementia. Notably over two-thirds of caregivers in our sample reported feeling lonely. Interventions aimed at reducing caregiving stress and supporting meaningful relationships may go some way towards helping to reduce loneliness.

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Section: Background: Loneliness and Family Caregivingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

Victor

Rippon

Quinn

et al. 2020

Aging & Mental Health

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“…By contrast, a clear and sensitive discussion about the diagnosis, tailored to the stage of the condition and the priorities and needs of the person with dementia and those caring for them, should lead on to considering practical interventions to allow all involved to ‘live well with dementia’. 5 6…”

Section: Introductionmentioning

confidence: 99%

Next steps after diagnosing dementia: interventions to help patients and families

Bayer

2020

Pract Neurol

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The way that a diagnosis of dementia is delivered to patients, what information is provided and what practical advice and support is arranged has a lasting impact and deserves at least as much attention as the process of assessment and investigation. Individuals and their families require an honest yet sensitive discussion about the nature and cause of their problems, using non-technical language and tailored to their priorities and needs. This should lead on to the provision of good-quality information in an accessible format. Priorities for intervention include medication review, attention to sensory deficits, appropriate pharmacological and nonpharmacological treatment, best use of memory aids and strategies and discussion of driving eligibility, financial entitlement and legal advice. Referral onwards should be made to an appropriate individual or service to provide ongoing emotional and practical support and signposting.

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“…The symptoms of dementia can affect individuals' personal and social circumstances, creating challenges to living well [3]. Supporting people with dementia brings its own challenges, and unpaid carers may require support to maintain social roles and resources [4]. Individuals living with the condition may need to make demands on the time and resources of unpaid carers and on services provided by health and social care.…”

Section: Introductionmentioning

confidence: 99%

Use and costs of services and unpaid care for people with mild‐to‐moderate dementia: Baseline results from the IDEAL cohort study

Henderson

Knapp

Nelis

et al. 2019

A&D Transl Res & Clin Interv

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Introduction We examined 3‐month service use and costs of care for people with mild‐to‐moderate dementia in Great Britain. Methods We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out‐of‐pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per‐group mean costs of diagnostic and sociodemographic subgroups. Results Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three‐quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). Discussion Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.

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A Comprehensive Model of Factors Associated With Capability to “Live Well” for Family Caregivers of People Living With Mild-to-Moderate Dementia

Abstract: Supplemental Digital Content is available in the text.

Cited by 41 publications

References 47 publications

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

Next steps after diagnosing dementia: interventions to help patients and families

Use and costs of services and unpaid care for people with mild‐to‐moderate dementia: Baseline results from the IDEAL cohort study

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