Understanding the needs of people with dementia and family carers

Bray, Jennifer; Evans, Simon; Thompson, Rachel; Bruce, Mary; Carter, Christine; Brooker, Dawn; Milosevic, Sarah; Coleman, Helen; McSherry, Wilfred

doi:10.7748/nop.27.7.18.e699

Cited by 10 publications

(34 citation statements)

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“…219 There are a variety of tools and resources designed to improve the identification of people with dementia in busy acute environments and make health-care settings dementia friendly (e.g. the Butterfly Scheme, 220 the Shining the Spotlight programme, 221 the Pabulum Blue Book, 222 'This is me', Carer's Passport, 223,224 trust dementia portals). However, there have been few evaluations of their effectiveness and we found no evidence to suggest that these initiatives were being used in specialist services for diabetes, stroke or VI.…”

Section: Dementia-friendly Environmentsmentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

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BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Dementia-friendly Environmentsmentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

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“…The data analysis stage employed constant comparative analysis to order, code, categorise and summarise the data. Studies were conducted in Australia (Luxford et al 2015), the UK (Baillie & Thomas, 2020; Bray et al, 2015; Brooker et al 2013; Leavey et al 2017; Sampson et al, 2016; Upton et al 2012) and Ireland (Department of Health (DoH), 2019; O’Reilly, 2016). Qualitative data collection methods included in‐depth interviews (Leavey et al, 2017), semi‐structured interviews (Baillie & Thomas, 2020; O’ Reilly, 2016) and case studies (Bray et al 2015; Brooker et al, 2013).…”

Section: Resultsmentioning

confidence: 99%

“…Studies were conducted in Australia (Luxford et al 2015), the UK (Baillie & Thomas, 2020; Bray et al, 2015; Brooker et al 2013; Leavey et al 2017; Sampson et al, 2016; Upton et al 2012) and Ireland (Department of Health (DoH), 2019; O’Reilly, 2016). Qualitative data collection methods included in‐depth interviews (Leavey et al, 2017), semi‐structured interviews (Baillie & Thomas, 2020; O’ Reilly, 2016) and case studies (Bray et al 2015; Brooker et al, 2013). Quantitative data collection methods included a pilot study (DoH, 2019), and mixed methods included questionnaires and observations (Sampson et al, 2016), and clinical indicator surveys and narrative text (Luxford et al, 2015; Upton et al, 2012).…”

Section: Resultsmentioning

confidence: 99%

The components of personal passports for people living with dementia in an acute healthcare setting: an integrative review

Beattie

Kerr

Larkin

et al. 2021

Journal of Clinical Nursing

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Aim To explore the components of personal passports for people living with dementia in an acute healthcare setting. Background Globally, supporting people with dementia poses a prominent health and social care challenge. Importance for people with dementia in an acute healthcare setting includes social relationships and communication with healthcare staff. A personal passport is an international initiative designed to support the personhood of the person living with dementia. Methods This integrative review is based on the methodology of Whittmore and Knafl (2005). The Preferred Reporting for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines and checklist were adhered to. A database search of PubMed, MEDLINE, CINAHL, Scopus and EBSCO databases was systematically performed. Results This integrative review identified nine research studies on the components of personal passports that met the inclusion and exclusion criteria. A constant comparative method of data analysis identified five key pivotal themes: person‐centredness, communication, family/carer involvement, education and leadership. Conclusion The use of personal passports supports the provision of person‐centred care for people living with dementia through enhancing the well‐being of both the person and their families/caregivers. Relevance to clinical practice Personal passports are an important document and should be determined by the person with dementia, their care needs and the caregiver's role in meeting these needs.

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“…This is supported by an integrated review of hospital care for people with dementia, where family carer participation in hospital care was found to be limited (Stockwell‐Smith et al, ). To improve communication between families and staff and promote person‐centred care, a carer passport can be used to override restrictive visiting hours and initiate discussions between carers and ward managers about how best to plan care (Bray, Evans, Thompson, Bruce, & McSherry, ).…”

Section: Discussionmentioning

confidence: 99%

Using a general theory of implementation to plan the introduction of delirium prevention for older people in hospital

et al. 2019

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Aim To develop an implementation plan for delirium prevention. Background The use of non‐pharmacological interventions to prevent hospital‐acquired delirium is well established but their implementation has been notoriously difficult to achieve. Systematic analysis of context as part of implementation planning is critical. Methods Ethnographic study was conducted in a 24‐bed general medical ward. Eleven patients and family members and 15 health service staff participated through observations, individual interviews and document review. Inductive analysis was used to generate themes that described enablers and barriers. Results Enablers included a ward culture that embraced safety and placing the person at the centre of care. Barriers were in tension with the enablers and included limited staff knowledge, specialist forms exclusive to the nursing discipline, inflexible ward routines and frequent disruptions. Conclusions In addition to standard implementation strategies such as individual education and leadership, implementing delirium prevention requires consideration of team practices, review of policy document design and identification of outcomes data than can support collaborative reflexive practice. Implications for Nursing Management The use of a theory‐informed ethnographic approach exposed tensions that may be otherwise invisible. Understanding the tensions increases the likelihood of implementation success. Using a systematic assessment approach can create a comprehensive implementation plan.

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Understanding the needs of people with dementia and family carers

Cited by 10 publications

References 0 publications

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

The components of personal passports for people living with dementia in an acute healthcare setting: an integrative review

Using a general theory of implementation to plan the introduction of delirium prevention for older people in hospital

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