Determinants of the Desire to Institutionalize in Alzheimer’s Caregivers

Gallagher, Damien; Mhaoláin, Áine Ní; Crosby, Lisa; Ryan, David L.; Lacey, Loretto; Coen, Robert F.; Walsh, Cathal; Coakley, Davis; Walsh, J. B.; Cunningham, Conal; Lawlor, Brian A.

doi:10.1177/1533317511400307

Cited by 58 publications

(83 citation statements)

References 35 publications

(48 reference statements)

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“…Family carers of people with dementia are at increased risk of experiencing depression, with~40% being at increased risk of developing clinically significant symptoms of depression and anxiety (Mahoney et al 2005). Treating carers' psychological distress and specifically depression is important for the individual and in addition, the presence of carer distress predicts care breakdown, admission to home care (Gallagher et al 2011), and increases risk of elder abuse (Cooper et al 2010). There are effective interventions such as the STrAtegies for RelaTives (START) (Livingston et al 2013) or the Resources for Enhancing Alzheimer's Caregiver Health intervention (REACH) (Gitlin et al 2003), which reduce risk of depression for carers and should therefore be made available.…”

Section: Prevention Of Dementia Recommendationsmentioning

confidence: 99%

The Lancet Commission on Dementia Prevention, Intervention, and Care: a call for action

Orgeta

Mukadam

Sommerlad

et al. 2018

Ir. j. psychol. Med.

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The purpose of this Editorial is to summarise the key recommendations of the Lancet Commission on Dementia Prevention, Intervention, and Care, reporting on the best available evidence to date on what we can do to prevent and intervene for dementia. We briefly describe the new life-course model of dementia prevention incorporating nine modifiable risk factors and their potential effect in reducing individuals' risk of dementia. We also summarise the recommendations of the report about which pharmacological, psychological, and social interventions are effective, and improve outcomes for people with dementia and their families. Recent developments highlight that there is good potential for the prevention of dementia. Progress in evidence-based approaches indicate the potential for dementia care to be of high-quality and widely accessible. Acting upon this knowledge now will reduce the global burden of dementia and improve the lives of people living with dementia and their families.

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Section: Prevention Of Dementia Recommendationsmentioning

confidence: 99%

The Lancet Commission on Dementia Prevention, Intervention, and Care: a call for action

Orgeta

Mukadam

Sommerlad

et al. 2018

Ir. j. psychol. Med.

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“…It is possible to infer therefore, that older people are more likely to seek extra care accommodation as a lifestyle choice, rather than a reaction to a crisis, as is often the case with moves to care homes. This inference is supported by evidence suggesting determinants of care home placement include vulnerability, poor health outcomes and depression within family caregivers (Gallagher et al, 2011).…”

Section: Extra Carementioning

confidence: 88%

Extra care: viable for couples living with dementia?

Poyner

Innes

Dekker³

2017

HCS

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Purpose The perspectives of people with dementia and their care partners regarding “extra care” housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. Design/methodology/approach Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically. Findings Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care. Research limitations/implications The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner. Practical implications The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia. Social implications The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be “home”, for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia. Originality/value This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia.

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“…5,6 These symptoms are more common when the family carer is older, a woman, living with the person with dementia and reports greater carer burden and behavioural symptoms of dementia. 5,6 This impacts on the NHS as well as on patients and families, as carer psychological morbidity, in particular depression, predicts care breakdown and, therefore, institutionalisation, 7,8 as well as elder abuse. 9 However, a recent report shows that levels of services and support for people with dementia and families are inadequate.…”

Section: Scientific Backgroundmentioning

confidence: 99%

“…In the original manual, the sessions were (1) stress and well-being, (2) target behaviours, (3) strategies for changing behaviour, (4) refining our behaviour plans, (5) behaviours and thoughts, (6) changing unhelpful thoughts, (7) communication styles, (8) communication and memory problems, (9) planning for the future, (10) more planning for the future, (11) pleasant events, (12) refining your pleasant events and (13) review and conclusion.…”

Section: Reducing the Number Of Sessionsmentioning

confidence: 99%

START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia

Livingston

Barber

Rapaport

et al. 2014

Health Technology Assessment

163

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BackgroundTwo-thirds of people with dementia live at home, receiving most care from family carers, about 40% of whom have clinically significant depression or anxiety. This impacts on the person with dementia, families and society, predicting care breakdown. There are currently no clinically effective and cost-effective NHS family carer interventions.ObjectivesTo assess the STrAtegies for RelaTives (START) intervention in the short (4 and 8 months) and long term (1 and 2 years) compared with treatment as usual (TAU).DesignRandomised, parallel-group, superiority trial with blinded assessment recruiting participants 2 : 1 (intervention to TAU) to allow for therapist clustering.SettingThree UK mental health services and one neurological service.ParticipantsFamily carers of people with dementia.InterventionEight-session manual-based coping intervention delivered by supervised psychology graduates to individuals.Main outcome measuresAffective symptoms [Hospital Anxiety and Depression Scale-total (HADS-T)] and cost-effectiveness. Secondary measures: anxiety and depression symptoms and caseness, quality of life (QoL), abusive behaviour and long-term care home admission.ResultsTwo hundred and sixty participants were randomised (173 intervention, 87 TAU). We used intention-to-treat analysis in the short term (152 intervention, 77 TAU) and in the long term (140 intervention, 69 TAU).In the short term, the intervention group had lower HADS-T [mean difference –1.80, 95% confidence interval (CI) –3.29 to –0.31;p = 0.02] and higher quality-adjusted life-years (QALYs) (mean difference 0.03, 95% CI –0.01 to 0.08). Costs were no different between groups [mean £252 (95% CI –£28 to £565) for intervention group]. The cost-effectiveness acceptability curve showed a greater than 99% chance of being cost-effectiveness at a £30,000/QALY willingness-to-pay threshold and a high probability of cost-effectiveness based on the HADS-T score. Carers in the intervention group had less case-level depression [odds ratio (OR) 0.24, 95% CI 0.07 to 0.76], a trend towards reduced case-level anxiety (OR 0.30, 95% CI 0.08 to 1.05), lower Hospital Anxiety and Depression Scale-anxiety (HADS-A) (–0.91, 95% CI –1.76 to –0.07;p = 0.03) and Hospital Anxiety and Depression Scale-depression (HADS-D) (–0.91, 95% CI –1.71 to –0.10;p = 0.03) and higher Health Status Questionnaire (HSQ) QoL (mean difference 4.09, 95% CI 0.34 to 7.83). Group differences in abusive behaviour (OR 0.48, 95% CI 0.18 to 1.27) and the person with dementia’s quality of life-Alzheimer’s disease (QoL-AD) (mean increase 0.59, 95% CI –0.72 to 1.89) were not significant.In the long term, the intervention group had lower HADS-T (mean difference –2.58, 95% CI –4.26 to –0.90;p = 0.03) and higher QALYs (mean difference 0.03, 95% CI –0.01 to 0.06). Carers in the intervention group had less case-level depression (OR 0.14, 95% CI 0.04 to 0.53), a trend towards reduced case-level anxiety (OR 0.57, 95% CI 0.26 to 1.24), lower HADS-A (–1.16, 95% CI –2.15 to –0.18) and HADS-D (1.45, 95% CI –2.32 to –0.57), and higher HSQ (mean difference 7.47, 95% CI 2.87 to 12.08). Thirty-two (18.7%) people with dementia in the intervention group and 17 (20.2%) in TAU were admitted to a care home (hazard ratio 0.83, 95% CI 0.44 to 1.56;p = 0.56). There were no significant differences between groups in abusive behaviour (OR 0.83, 95% CI 0.36 to 1.94), the person with dementia’s QoL-AD (0.17, 95% CI –1.37 to 1.70) or costs (£336, 95% CI –£223 to £895) for intervention group. The probability that the intervention would be seen as cost-effective at £30,000/QALY threshold and cost-effectiveness on the HADS-T remained high.ConclusionsThe START intervention was clinically effective and cost-effective in the short and longer term. The results are robust to the sensitivity analyses performed. Future work is needed to consider mechanism of action; the effects on people with dementia in clinical terms (cognition, neuropsychiatric symptoms, longer-term care home admission); and on health and social care costs. In addition, we will explore the effects of carer abusive behaviour on the care recipient’s care home admission and if this then reduces abusive behaviour. We would also like to implement START and evaluate this implementation in clinical practice.Trial registrationCurrent Controlled Trials ISCTRN70017938.FundingThe National Institute for Health Research Health Technology Assessment programme.

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Determinants of the Desire to Institutionalize in Alzheimer’s Caregivers

Abstract: Interventions which seek to reduce caregiver desire to institutionalize should adopt a multifactorial approach to reduce symptoms of burden and depression in caregivers.

Cited by 58 publications

References 35 publications

The Lancet Commission on Dementia Prevention, Intervention, and Care: a call for action

The Lancet Commission on Dementia Prevention, Intervention, and Care: a call for action

Extra care: viable for couples living with dementia?

START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia

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