Karen Harrison Dening

Advance care planning for people with dementia: a review.

BACKGROUND Few people with dementia have made advance plans for their health care. Advance care planning (ACP) is a process of discussion between an individual and their care providers that takes account of wishes and preferences for future care. We aimed to examine the facilitators and inhibitors to ACP in people with dementia. We also aimed to identify key themes in the literature and critically review the methodologies used. METHODS We systematically searched the English language literature including PubMed, CINAHL, AMED, PsychINFO, EMBASE and BNI. We included empirical studies which reported the characteristics of the patient population, the type of advance care planning used and the study setting, and which involved people with dementia, family members or professional carers. RESULTS We identified 17 studies (11 quantitative methods, one qualitative and five mixed methods). We found one ACP intervention which changed outcomes for people with dementia. Key themes were identified: there is a point at which cognition decreases critically so that an advanced care plan can no longer be made; factors present in family carers and professionals can influence decision-making and the ACP process; ACPs are affected by preferences for life sustaining treatments; ACP in dementia may differ from other illness groups; and there is a need for education relating to ACP. CONCLUSION The current evidence base for ACP in dementia is limited. Since UK government policy recommends that all people should engage in ACP, more evidence is needed to understand the feasibility and acceptability of advanced care plans for people with dementia.

Preferences for end-of-life care: A nominal group study of people with dementia and their family carers

Background: The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers. Aim: To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia. Design: Nominal group technique. Setting/participants: People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services. Methods: Three modified nominal group technique groups were conducted in five stages: (1) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8. Results: Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia. Conclusions: Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.

Improving end of life care for people with dementia: a rapid participatory appraisal

Objectives People with dementia and their carers may experience poor end of life care, often having to navigate complex health and social care systems. The objectives of this study were to identify: (1) barriers for people with dementia and their carers in accessing good quality end of life care and (2) cost-effective ways of enabling improvements. Methods Rapid participatory appraisal gains information from different sources across a single locality. Participants were carers of people who had died of dementia, health and social care staff. Care pathways were modelled. Barriers identified from qualitative work were triangulated with detailed case audit and economic analysis. Results were presented to the stakeholder group who generated feasible solutions. Results Nine cases were audited (predominantly white British male subjects, 64–84 years with advanced dementia). Six resided at home, one in a care home and two in continuing care wards. Five died in their place of residence and four in the acute hospital. Care costs over the 6 months before death were higher in care homes or continuing care (£37 029) than for those living at home (£19 854). Synthesis of qualitative and quantitative data generated areas for improvement: patient pathway, impact of acute hospitalisation, economic costs, advance care planning, impact on carers, skills and training of health and social care staff. Conclusions This method provided evidence for stimulating change in the health and social care system. Following the patient journey and identifying barriers to care allowed local context to be considered. Service providers generated solutions enabling ‘ownership’ of changes to service delivery.

Taking stock: A multistakeholder perspective on improving the delivery of care and the development of treatments for Alzheimer's disease

Health‐care stakeholders increasingly recognize that the scientific and economic challenges associated with Alzheimers disease (AD) are simply too great for individual stakeholder groups to address solely from within their own silos. In the necessary spirit of collaboration, we present in this perspective a set of multicountry multistakeholder recommendations to improve the organization of existing AD and dementia care and the development of new treatments. In brief, the five recommendations are (1) health‐care systems must make choices regarding the patient populations to be diagnosed and treated, (2) health‐care systems should use an evidence‐based standard of care, (3) increased collaboration between public and private institutions is needed to enhance research, (4) reimbursement end points need to be agreed on and validated, and (5) innovative business models should be used to spur the introduction of new medicines.

P-103 A community of practice: building capability to provide high quality dementia care

In recent years there has been a significant increase in policy and guidance, across many countries, to promote palliative and end-of-life care for non-malignant life-limiting conditions. Most notably for people with dementia (PWD) at the end-of-life and facilitate better access to palliative care. PWD, particularly those in the advanced stages, may experience poor end-of-life care because they may not be perceived to have a terminal illness. There is concern in some settings and services that staff are ill – equipped to care for PWD, in respect of knowledge and skills. Both Hospice UK and Dementia UK thus launched the ‘Dementia in palliative and end-of-life care Community of Practice’ to bring together practitioners keen, in the spirit of mutual learning, to share knowledge and practice and provide high quality palliative and end-of-life care for families affected by dementia. At the inaugural meeting a nominal group technique was used to identify learning needs across both groups of clinicians. Thirteen learning needs were identified, of which five were ranked as priorities to be met during future meetings. Shared learning through a community of practice is a way of harnessing the expertise across the two care domains, with the common objective of improving the lives, and deaths of PWD and in better support of their families. We hold two community meetings a year and due to increase in engagement will be hosting a conference in 2017. Events are well evaluated and membership is growing.

O-69 Advance care planning in dementia: understanding the preferences of people with dementia and their family carers

Background The UK End of Life Care (EoLC) Strategy proposed that all people should identify preferences for end of life care. Aim To explore whether family carers of a person with dementia (PWD) can accurately predict their preferences for EoLC and what factors influence this. Methods This mixed methods study began with nominal groups (NG) to explore if PWD and carers could generate and prioritise preferences for EoLC and if carers influenced the PWD’s choices. Phase 2 involved 60 dyad interviews using a modified Life Support Preferences Questionnaire to assess whether carers could predict the PWD’s preferences for treatment in three health states. Influence of carer burden, distress, and relationship quality were measured. Nested qualitative interviews added personal contexts to decision making. Results In NGs, PWD struggled to conceive of their future selves and think about preferences for EoLC. Carers’ views were influenced by their personal experiences and negative media coverage and they tended to override the PWD’s views. In interviews, carers predicted the PWD’s preferences in the here-and-now but were inaccurate in future hypothetical health states. Both showed uncertainty about EoLC treatment choices. Relationship quality, carer distress and burden did not influence accuracy of prediction. In qualitative interviews, while dyads claimed to have a shared decision making approach, joint healthcare decision making had largely been untested. Conclusion Families affected by dementia require practical and emotional support at the outset to accommodate changes in patterns of decision making, prepare for changes ahead and ensure that PWD’s preferences are upheld.

The impact of acute hospitalization on people with dementia: The behavior and pain (BepAid) study

those receiving one yearly follow up visit and those receiving a 6 months visit to the memory clinics. An assessment of cognitive, functional, quality of life, health economic cost indicators was made at entry and at the end of the study. Linear mixed models with random intercept and slope were used to compare outcomes in both groups. 1. Nourhashemi F, Andrieu S, Gillette-Guyonnet S, Giraudeau B, Cantet C, Coley N, Vellas B; PLASA Group. Effectiveness of a specific care plan inpatients with Alzheimer’s disease: cluster randomised trial (PLASA study). BMJ2010;3;340:c2466. Results: Patients with 6 M (n1⁄4 163) or yearly follow-up (n 1⁄4 251) were quite similar at study entry. The decline in MMSE score at 2 years was less by 1.21 6 0.60 point (p 1⁄4 0.04) in patients with a 6 M follow up than in those with a 12 M follow-up. The yearly hospitalization rate significantly differed (19.8 % for 6 M vs 26.9 %)(p1⁄40.03). The incidence of nursing home entry per year was7.1% vs 10.6% and death 0.7% vs 2.1% by year in favour of the 6 M group but did not reach significance. No differences were found in function as measured by the ADCS-ADL. Health economics expenses were similar in both groups (p1⁄40.98)Conclusions:This is the first study to compare clinical outcomes for memory clinic patients with different follow-up frequencies. Our findings suggest that six month follow-up intervals may provide a clinical benefit over yearly ones by modestly attenuating cognitive decline and possibly reducing hospitalisation in patients with dementia without generating extra costs.