Emotional impact of living with dementia

This brutally honest video reminds us that although dementia causes the loss of some abilities, people's feelings remain intact.  The people in this video talk about their emotions: fear, guilt, embarrassment, isolation and powerless.  They give a deeply moving and personal insight into an often overlooked aspect of the condition.  

The video shows how supportive relationships with families, friends and professional carers can play a key role in supporting people with dementia.  

The video is a powerful reminder of the importance of getting to know the person with advancing dementia as an individual and to help support them to maintain their own identity. 

Messages for practice

1. People living with dementia can still be alert and aware of their condition
   
2. It is important to know the person with advancing dementia as an individual and support them to maintain their own identity
   
3. Although dementia causes the loss of some abilities, people's feelings remain intact; it is essential to empathise with people's emotions
   
4. Caring and supportive relationships help people to cope with the difficult experience of living with advancing dementia.

Who will find this useful?

Care staff, social workers, care managers, carers, community nurses, nursing staff, occupational therapists, people with dementia, people who use services, employers, trainers, families, friends and neighbours.

• Useful links Open

  A guide to psychosocial interventions in early stages of dementia
  The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.

  Alzheimer’s Society Campaigners’ Network
  The Alzheimer’s Society has a Campaigners’ Network, made of people with a range of interests in dementia, including people living with dementia and carers. This group is involved in many aspects of the Alzheimer’s Society’s work, including responding to consultations, making conference presentations and evaluating the effectiveness of information resources.

  DASNI
  Dementia Advocacy and Support Network International (DASNI) is an internet-based support network established to provide a forum for people with dementia to exchange information and offer support and information to one another. DASNI members (a third of whom have dementia) are encouraged to participate in their own care and treatment, including making presentations at conferences, publishing books, giving interviews and writing articles on living with dementia.

  Dementia Connect
  This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.

  Dementia Alliance International
  The Dementia Alliance International is the peak global group that represents, supports and educates people living with dementia. Membership is free and is only open to people living with dementia. DAI offers a range of services including online support groups, webinars and newsletters. In 2016 DAI published The human rights of people living with dementia: from rhetoric to reality. This guidebook is aimed at people diagnosed with dementia and explains the significance of human-rights based approaches in all campaigning and advocacy efforts for people with dementia.

  Dementia Diaries
  The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

  Dementia Engagement and Empowerment Project
  This project aims to identify and support groups and projects that are led by or actively involve people with dementia across the UK and that are influencing services and policies relating to dementia. The project is a collaboration between the Mental Health Foundation, Innovations in Dementia with funding from the Joseph Rowntree Foundation. A 2015 report from DEEP entitled Developing a national user movement of people with dementia describes the growth of DEEP since 2012. DEEP has also produced a series of 15 short guides to support more active involvement of people with dementia.

  Dementia guide
  The Alzheimer’s Society Dementia guide (2017) is for anyone diagnosed with any type of dementia and their friends and family. The guide covers ‘About dementia’ and ‘Treatments’, and also ‘Planning ahead’, ‘Research’, ‘Services for people with dementia’, and ‘Support for carers’. The guide is available online or to order as a hard copy for free.

  Dementia Peer Support Resource Pack
  This pack includes a wide range of resources to  support the development of peer support groups for people living with dementia. It includes films, case studies, policy and research related to the benefits of peer support for people with dementia, as well as information on funding, staff training and evaluation of groups.

  Scottish Dementia Working Group
  The Scottish Dementia Working Group (SDWG) is an independent group run by people with dementia, and open to all people with dementia. The purpose of the SDWG is to campaign to improve services for, and attitudes towards, people with dementia.

  Still going strong
  This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.

  Talking Point
  Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.

  This is me
  This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.

  Younger people with dementia: living well with your diagnosis
  This resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017.