The purpose of this briefing paper is to explore what ‘recovery’ might mean for those with a diagnosis of dementia.
The authors explore what enables people to regain hope and live positively, maintain personal control and have the opportunity to do the things they value, remain a valued part of their community and participate not as victims, but as citizens.
‘Continuing to be me’ – Recovering a life with a Diagnosis of Dementia was launched at ImROC training events facilitated by Dr Rachel Perkins on Central and North West London NHS Foundation Trust Older People’s wards on 30 September 2016.
This is the report of the major Inquiry about Truth and Lying in Dementia Care, commissioned and funded by the Joseph Rowntree Foundation.
There are around 850,000 people living with dementia in the UK and the ageing population suggests this figure will rise significantly. Around half of these people may be living with different realities.
Carers often have challenging decisions to make when a person is living with different realities and beliefs – something that increases as the dementia accelerates. Should they agree or contradict? What should they say? This report looks to provide guidance in these situations.
This guide is written by and with several groups which are members of the DEEP network, with the aim of helping other people with dementia in influencing and activism groups. It offers hints, tips and suggestions based on their experience of trying to make change happen. The booklet aims to be a helpful resource for other groups in DEEP (or indeed other dementia activism groups), in the UK and possibly beyond. It is written by and with people with dementia, for people with dementia… and should also be useful for group facilitators/supporters
The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better. This guide has been authored by Philly Hare on behalf of the Dementia Policy Think Tank. This group – which is a member of the UK wide DEEP network – was set up in 2016 by a number of people with a diagnosis of dementia who have a particular interest in promoting rights and influencing policy issues.
Living with dementia is a challenge, and you may well need support. But getting the services and help you need is not always easy. This booklet explains why it can be helpful to know–and talk about–your rights.
Rights can help us to uphold shared values in challenging circumstances. The language of rights can help you feel more confident and empowered. Although rights and laws are about everyday life, they can feel complicated. However, there are services, helplines and advocates who can help you to ask for what you need, and to challenge decisions when they seem to ignore your rights.
Here are some reflections about the programme from ten of the many people with dementia who have been involved.
Guide to a Dementia Friendly Community: Ideas for cross-sector and cross-generation initiatives, Japan
This Guide to a Dementia Friendly Community, published in Japan in 2016, draws substantially on examples from the UK and highlights the importance of people with dementia being right at the heart. The guide states: “What is consistent across all communities passionately engaged in creating a dementia friendly environment is an active participation by the people with dementia. In places where they play a specific role in the efforts, we can sense this sense of excitement and spirit across the community, including the people with dementia.”
Over the course of the programme, JRF forged many creative partnerships, commissioned numerous projects, published reports and papers, produced films, and worked hard to engage meaningfully with people with dementia. With almost all of the publications now available, this article by Progamme Lead Philly Hare takes stock of what has been learnt and what has been achieved.
This paper is published in Working with Older People, Vol. 20 Iss: 3, pp.134 – 143.
The West Yorkshire Playhouse has produced this guide to staging dementia friendly performances. The guide is based on experiences from dementia friendly performances based at West Yorkshire Playhouse, Curve theatre and the Millemnium Forum and aims to increase access to ‘life-enhancing shows’ for people with dementia by reconnecting them to their local cultural venues and their communities.
The aim of this study was to gather information about the so called ‘dementia-friendly communities’ across Europe to increase understanding, knowledge and awareness. It was commissioned by the European Foundations’ Initiative on Dementia (EFID) and carried out by a UK non-governmental organisation (NGO), the Mental Health Foundation in 2014 and 2015.
Two thirds of people with dementia are women. Caring is often seen as the role of women. Differences like these can also have implications for how men cope with dementia. But dementia is not often considered in terms of gender. This may mean that services for people with dementia do not take into account these important differences. What are the challenges for women and men affected by dementia, for practitioners, services and policy makers? How can a focus on equalities help with this?
The second meeting of the Values, Equalities, Rights and Dementia network (VERDe) in London on the 2 June 2016 focused on these issues.
This is the report from that meeting.