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Taking a break. Use of residential respite by people with dementia and carers: access, experience, outcomes.

Call for evidence: Models of residential respite services for people with dementia

Respite services give carers a break from caregiving. They are often seen as an essential element of support, one which may delay or prevent a move to a care home. Sometimes, the term ‘restorative care’, instead of ‘respite care’, may be used to reflect the benefits for the people being catered for.

We are researchers at the NIHR Health & Social Care Workforce Research Unit at King’s College London seeking information about different models of residential respite services for older people living with dementia. The purpose of this is to gain an overview of the different models or residential respite available in England. This study is funded by the Alzheimer’s Society.

Can you help?

If you would like to contribute or find out more about this call, please complete this response sheet.

—posted 5 June 2019

About this study

This study is investigating the use of ‘residential respite’ services (a short stay in a care home) which provide a break for both people with dementia and their carers.

Timescale

2019 – 2021

Research team

Kritika Samsi, Jill Manthorpe, Laura Cole and Katharine Orellana

Funding

Alzheimer’s Society Grant ref. 458

Background

Respite services aim to give carers a break from caregiving and are often seen as an essential element of support, one which may delay or prevent moving to a care home. The challenges of looking after someone with dementia at home are well documented; they include possible exhaustion, stress and burnout.

Respite services also provide a break for the person being cared for. Carers seem more likely to take up respite services if they see them as mutually beneficial to both them and their relative with dementia. This is why terms such as ‘short breaks’ or ‘restorative care’ are sometimes used.

Carers may want a break that is short-term (an afternoon to go shopping, for example), but sometimes they can be longer and residential (for example, the person with dementia goes for a temporary stay in a care home while a family carer goes on holiday or has a rest).This study is about ‘residential respite’ by which we mean a short stay in a care home.

There is limited understanding about the use, take up and experiences of residential respite amongst people with dementia and carers: the experiences of those who have used this, as well as possible barriers to uptake, or the views of those who have chosen not to use respite even if available and affordable.

Methods

This study is in two parts. Part 1: We will map residential respite provision (models of and payment for). This part will include a call for evidence from the care home sector and hold a workshop with stakeholders to determine stakeholder views of the adequacy of existing models of respite, covering care homes but also other models of residential respite, such as holidays or short-breaks. In Part 2, we will interview people with dementia and carers who have or have not used residential respite services. We will explore experiences, access and outcomes of residential respite services. Two measures will ask people with dementia and carers about their general health, quality of life, and the extent of impact of residential respite; these data will provide contextual information to the themes identified from interviews.

Impact

We hope to ascertain why respite take-up might be seen as not appropriate at a time when personalised care is part of the care home ‘offer’, what barriers and facilitators exist in accessing person-centred and good quality respite care, and to identify ways in which residential respite can be presented accurately to people with dementia and carers. Understanding these perspectives and studying the outcomes of participants’ experiences will inform care providers’ planning, as well as the information and advice given by health and care practitioners (including dementia navigators). Findings may also shed light on what interventions may be developed for people with dementia and carers who want to use respite services, but face certain barriers, and how public funding such as Personal Budgets and Personal Health Budgets are being used to fund residential respite.

We will widely publicise findings to local community dementia and carers’ groups. We hope that people will use this information to be better informed and prepared to take such a break or to consider other options. We will also produce summaries and factsheets to help dementia care and carer practitioners.

We will also share findings at events for care workers and providers, national and international conferences (to reach professional, educational, commissioning networks, older people’s and carers’ networks) and through academic journals, trade press and the popular press.

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