Service utilisation and family support of people with dementia: a cohort study in England

Gage, Heather; Cheynel, Jerome; Williams, Peter; Mitchell, Kathryn; Stinton, Christopher; Katz, Jeanne; Holland, Caroline; Sheehan, Bart

doi:10.1002/gps.4118

Cited by 14 publications

(10 citation statements)

References 63 publications

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“…Long-term family conflict over care provision may lead to the person with dementia being admitted into a care home. 47 In measuring levels of stress in carers of people with dementia, Gage et al 48 found that this was significantly reduced when the person they cared for was admitted to residential care.…”

Section: Resultsmentioning

confidence: 99%

“…Of the ten studies, four (five papers) were from the USA, 17 , 25 , 45 – 47 three from the UK, 48 – 50 two (four papers) from Australia, 51 – 54 and one from Taiwan. 55 Three studies used a cross-sectional telephone survey, 17 , 45 , 47 three studies conducted qualitative interviews with carers, 49 , 51 – 53 , 55 and three studies utilized a mixed methods approach.…”

Section: The Experience Of Hospital Discharge Planning For Family Carmentioning

confidence: 99%

“… 55 Three studies used a cross-sectional telephone survey, 17 , 45 , 47 three studies conducted qualitative interviews with carers, 49 , 51 – 53 , 55 and three studies utilized a mixed methods approach. 25 , 48 , 54 One study performed a secondary statistical analysis from a parent study. 50 …”

Section: The Experience Of Hospital Discharge Planning For Family Carmentioning

confidence: 99%

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A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

Mockford¹

2015

JHL

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In the UK, service user involvement is an important factor in health policy, and obtaining research funding. It may be helpful in expanding our knowledge in areas where research evidence is poor such as experiences of hospital discharge planning for the family carers of people with dementia.MethodsA rapid review. All study designs published in the English language were eligible for inclusion. Databases included: Medline, Embase, CINAHL, PsycInfo, Cochrane library and Web of Knowledge. A qualitative analysis was undertaken.ResultsFour themes were identified: preparation for hospital discharge – dissatisfaction with being kept informed, discharge arrangements and management of conditions; little time to prepare. Communication between staff and families at discharge – insufficient communication regarding services, not being listened to and being undervalued as a resource could compromise post-discharge care. Support services post discharge – carers need help negotiating, and working with, services with regard to timing, and meeting requirements. Coping post hospital discharge – inadequate understanding about ability to cope, and patient’s impairment, and family conflict over care may lead to unnecessary re-admission to hospital, or long term care. Evidence of specialist dementia models at discharge is described.DiscussionCarers are not always involved in hospital discharge planning as well as they might be. Issues are complex and depend on a number of factors. Poor communication can be overcome and carers can be better supported to cope post discharge as illustrated in the dementia models. The evidence base is weak but the absence of evidence does not indicate an absence of good practice.ConclusionCarers who may feel their world is far removed from the academic world may not ordinarily participate in research studies. Service users, as co-researchers, may be able to improve trust and rapport between research and communities, collect fresh insights and gain deeper and more insightful data from participants.

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Section: Resultsmentioning

confidence: 99%

Section: The Experience Of Hospital Discharge Planning For Family Carmentioning

confidence: 99%

Section: The Experience Of Hospital Discharge Planning For Family Carmentioning

confidence: 99%

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A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

Mockford¹

2015

JHL

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“…Other benefits from outdoor walking group activities include: continuity of self and identity [ 4 – 6 ]; raised self-esteem, pleasure derived from observing nature, spatial awareness, mood upliftment, reduced agitation, relaxation, improved communication and, enjoyment from sensory stimulation [ 7 , 8 ]. Physical and psychological benefits apart, walking as part of a group can enable people with dementia to become (or remain) part of social networks [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community: a systematic review

Všetečková

Daďová

Gracia

et al. 2020

Eur Rev Aging Phys Act

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Summary Background & Aims Evidence suggests that targeted exercise is important for people living with dementia. The aim of this review was to collect and synthesize evidence on the known barriers and facilitators to adherence to walking group exercise of older people living with dementia in the community. Methods We have searched appropriate electronic databases between January 1990 until September 2019, in any language. Additionally, we searched trial registries (clinicaltrial.gov and WHO ICTRP) for ongoing studies. We included all study designs. Studies were excluded when participants were either healthy older people or people suffering from dementia but living in residential care. Narrative synthesis was used. Findings 10 papers met the inclusion criteria. The narrative analysis focused on barriers, facilitators, and adherence. All studies reported on barriers and facilitators. Barriers included: bio-medical reasons (including mental wellbeing and physical ability); relationship dynamics; and socio-economic reasons and environmental issues. Facilitators included: bio-medical benefits & benefits related to physical ability; staff, group relationship dynamics and social aspect of walking group; environmental issues and individual tailoring; and participants perceptions about the walks & the program. Most studies did not provide data about adherence or attendance; where reported, adherence ranged from 47 to 89%. Conclusions This systematic review of literature has highlighted known barriers and facilitators to adherence to walking groups type of exercise for people living with dementia in community. Carers’ willingness to engage, their circumstances, perspectives and previous experiences of exercise seem to play a key role in facilitating adherence but there is little research that explores these. Also, the design, location and organisation of walking groups facilitate adherence. This reflects the need for such activities to be part of a wider ‘program of care’, tailored to the needs of the individual, flexible and convenient. Knowledgeable and well-trained instructors or healthcare professionals are recommended as group exercise leaders.

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“…Although costs of dementia care to society are high, the burden of care falls disproportionately on unpaid carers [5][6][7][8]. Previous UK person-level studies of care for people with dementia [9][10][11][12][13][14][15] have used relatively small samples, covered limited geographical areas, or focused on unconfirmed diagnoses or diagnosis of a single dementia type. This limits the information available to decision makers planning how to meet the needs of people living with dementia and their families [16,17].…”

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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Service utilisation and family support of people with dementia: a cohort study in England

Abstract: Caring for people with dementia at home may be more expensive, and more stressful for carers, than care in residential settings.

Cited by 14 publications

References 63 publications

A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community: a systematic review

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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Service utilisation and family support of people with dementia: a cohort study in England

Abstract: Caring for people with dementia at home may be more expensive, and more stressful for carers, than care in residential settings.

Cited by 14 publications

References 63 publications

A review of family carers&#39; experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

A review of family carers&#39; experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community: a systematic review

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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A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research