How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study

Lord, Kathryn; Livingston, Gill; Robertson, Sarah; Cooper, Claudia

doi:10.1186/s12877-016-0242-1

Cited by 79 publications

(116 citation statements)

References 14 publications

(13 reference statements)

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“…Relatives may be influenced by a person's previously expressed wishes, spousal commitments, and cultural expectations about care home placement. Relatives often need to make stressful health care decisions against the wishes of the care recipient, and it may be that the relatives' persisting unhappiness about these decisions affect perceived quality of life. Interventions may, therefore, never improve family perceptions of quality of life if the person with dementia remains in a care home.…”

Section: Discussionmentioning

confidence: 99%

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Robertson

Cooper

Hoe

et al. 2019

Int J Geriat Psychiatry

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Background Quality of life is important especially in incurable illness. In dementia, we often need proxy reports of quality of life, but we know little about how individuals make their judgements. In care homes, proxies may be staff providing care or relatives, but staff rate quality of life differently to family. To our knowledge, no one has explored this qualitatively, so we used qualitative interviews to explore why staff and family think differently about quality of life. Methods We interviewed 12 staff and 12 relatives who had provided proxy ratings of quality of life for people living with dementia in care homes in the Managing Agitation and Raising Quality of life (MARQUE) study. We asked why they had rated the resident's quality of life as “Very Good, Good, Fair, or Poor.” Using thematic analysis, we compared staff and relatives' proxy responses. Results For staff, the concept of quality of life was often viewed synonymously with quality of care, influenced by their sense of responsibility and informed by their professional understanding. For relatives, quality of life was often judged in relation to how the person with dementia lived before diagnosis and was influenced by their perception of loss for the person with dementia and their own adjustment. Conclusions Proxy reports were influenced by rater's own contexts and experiences. This can enhance our understanding of widely used research tools, aid the evaluation of intervention outcomes, and indicate possible targets for improving perceived and actual quality of life of people with dementia.

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Section: Discussionmentioning

confidence: 99%

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Robertson

Cooper

Hoe

et al. 2019

Int J Geriat Psychiatry

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“…People with dementia from some BME groups are less likely to move to a care home than those from the white majority population . Possible explanatory factors include expectations among family carers that services will be culturally inappropriate (in terms of language and food), and a greater sense of filial piety and obligation . Care home staff have reported challenges providing culturally appropriate care, for example appropriate diets and translation services, and in day to day communication .…”

Section: Introductionmentioning

confidence: 99%

Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey

Cooper

Rapaport

Robertson

et al. 2017

Int J Geriat Psychiatry

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ObjectiveAs not speaking English as a first language may lead to increased difficulties in communication with staff and other residents, we (1) tested our primary hypotheses that care home residents with dementia speaking English as a second language experience more agitation and overall neuropsychiatric symptoms, and (2) explored qualitatively how staff consider that residents' language, ethnicity, and culture might impact on how they manage agitation.MethodsWe interviewed staff, residents with dementia, and their family carers from 86 care homes (2014–2015) about resident's neuropsychiatric symptoms, agitation, life quality, and dementia severity. We qualitatively interviewed 25 staff.ResultsSeventy‐one out of 1420 (5%) of care home residents with dementia interviewed spoke English as a second language. After controlling for dementia severity, age, and sex, and accounting for care home and staff proxy clustering, speaking English as a second language compared with as a first language was associated with significantly higher Cohen‐Mansfield Agitation Inventory (adjusted difference in means 8.3, 95% confidence interval 4.1 to 12.5) and Neuropsychiatric inventory scores (4.1, 0.65 to 7.5). Staff narratives described how linguistic and culturally isolating being in a care home where no residents or staff share your culture or language could be for people with dementia, and how this sometimes caused or worsened agitation.ConclusionsConsidering a person with dementia's need to be understood when selecting a care home and developing technology resources to enable dementia‐friendly translation services could be important strategies for reducing distress of people with dementia from minority ethnic groups who live in care homes.

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“…The impact this has on patient experience and use of health resources has been well documented 21. The provision of an up-to-date database could lead to significant time saving to professionals as well as parents.…”

Section: Discussionmentioning

confidence: 99%

Paediatric neurorehabilitation: finding and filling the gaps through the use of the Institute for Manufacturing strategic roadmapping method

et al. 2017

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IntroductionAcquired brain injury (ABI) is a major cause of morbidity and mortality in childhood. Specialist rehabilitation services are often situated far from families and local services may be non-standardised and fragmented. A strategic level of understanding is needed to improve patient care and outcomes. Roadmapping techniques are commonly used in industry settings to discover and present a systematic understanding of structures; however, they are rarely used in the healthcare setting. With continuing pressures on healthcare systems worldwide, they provide an effective method for examining services.MethodsThe Institute for Manufacturing (IfM) strategic roadmapping method was used to identify areas of difficulty and opportunities in paediatric neurorehabilitation. Participants included stakeholders from a wide range of professions and sectors who have input with children after ABI.ResultsDelegates identified a range of ‘layers’ covering trends, drivers, current experience and unmet needs. From these layers, four priorities were identified and further expanded.These included: ‘access to medical and therapy expertise close(r) to home’, ‘shared understanding across family, school and health’, ‘family and professional awareness of resources and support’ and ‘establishing a centre for rehabilitation technology evaluation, advice and co-ordination of services and research’.ConclusionThe IfM strategic roadmapping method identified and developed key areas for development in the field of paediatric neurological rehabilitation. Healthcare professionals looking at strategic level difficulties should strongly consider the use of such systematic tools when evaluating areas of practice.

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How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study

Cited by 79 publications

References 14 publications

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Why do staff and family think differently about quality of life in dementia? A qualitative study exploring perspectives in care homes

Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey

Paediatric neurorehabilitation: finding and filling the gaps through the use of the Institute for Manufacturing strategic roadmapping method

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