Right at Home: Living with Dementia and Multimorbidities.

Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multimorbidities presents critical challenges for homecare worldwide. Healthcare systems struggle to provide adequate home-care services, delivering limited care restricted to a single-condition focus. This study explored the experiences and expectations of homecare from the multiple perspectives of people living with dementia and multimorbidities and homecare workers providing support. Findings draw from qualititative semi-structured interviews with people with dementia (n=2), their partners (n=2), other partners or family carers (n=6) and homecare workers (n=26). Three themes are idenfiifed: (a) the preference for and value of home; (b) inadequate homecare provision and enhanced care-burden; (c) limited training and education. Despite continued calls for homecare investment, the focus on reduction in costs hides key questions and further dialogue required exploring how people with dementia can be supported to live independendently and flourish at-home. This study considers these complex experiences and care requirements through the prism of disability and human rights frameworks. This paper concludes with consideration of more recent human social rights debate. We critically dicuss what this may mean for people living with dementia and consider the implications for corequisite policy development to optimise available homecare support.

Understanding and Measuring the Wellbeing of Carers of People With Dementia.

BACKGROUND AND OBJECTIVES: To determine how the wellbeing of carers of people with dementia is understood and measured in contemporary health research. RESEARCH DESIGN AND METHODS: A systematic review of reviews was designed, registered with PROSPERO, and then conducted. This focused on systematic reviews of research literature published from 2010 onwards; with the wellbeing of carers of people with dementia being a primary focus. N = 19 studies met the inclusion criteria. Quality appraisal was conducted using the AMSTAR tool (2015). A narrative synthesis was conducted to explore how wellbeing is currently being understood and measured. RESULTS: Contemporary health research most frequently conceptualizes wellbeing in the context of a loss-deficit model. Current healthcare research has not kept pace with wider discussions surrounding wellbeing which have become both more complex and more sophisticated. Relying on the loss-deficit model limits current research in understanding and measuring the lived experience of carers of people with dementia. There remains need for a clear and consistent measurement of wellbeing. DISCUSSION AND IMPLICATIONS: Without clear consensus, health professionals must be careful when using the term "wellbeing". To help inform healthcare policy and practice, we offer a starting point for a richer concept of wellbeing in the context of dementia that is multi-faceted to include positive dimensions of caregiving in addition to recognized aspects of burden. Standardized and robust measurements are needed to enhance research and there may be benefit from developing a more mixed, blended approach to measurement.

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery.

BACKGROUND: Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2-arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability. OBJECTIVE: To explore views and motivations towards a proposed 2-arm stem cell trial and identify factors that may impede and enhance participation. DESIGN: This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action-research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40-75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach. DISCUSSION AND CONCLUSION: Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post-trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2-arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.