Living with dementia
This section looks in detail at lots of aspects of living with dementia – for the person with the diagnosis, and their family and friends too. Staying active and eating well matter greatly and can help a person live well with dementia. Behaviour, learning disability and sensory loss all have an impact.
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Keeping active and occupied
Dementia can have an impact on a person's ability to carry out certain activities. Care workers have a role to play in working alongside family carers and friends to bring activity into the daily life of a person with dementia. This sections looks at why activity matters, and activities which may help a person with dementia.
Eating well is vital to maintain the health, independence and wellbeing of people with dementia. However, for many people with dementia, eating can become challenging as their dementia progresses. Some lose their appetite or the skills needed to use cutlery, others struggle to chew and swallow.
Black and Minority Ethnic (BME) communities
A lack of awareness and knowledge of dementia means black and minority ethnic older people are often diagnosed at a later stage of the disease than other people. As the number of older people from BME groups continues to increase, services must become more attuned to their needs and wishes
Supporting a person with dementia can be very rewarding. But situations can arise that are difficult for the person with dementia or those supporting them – or both parties. This can include aggressive behaviour, being repetitive, being withdrawn, refusing help, difficulties using the toilet, and relating to a person with dementia who is living a different ‘reality’ to yours.
Learning disabilities and dementia
People with a learning disability are at greater risk of developing dementia as they get older compared to the general population. People with Down's syndrome are at significant risk of developing dementia. Care staff need to be aware of the changing needs of people with a learning disability as they get older. The design of the built environment is important for someone with a learning disability and becomes even more critical if the person develops dementia.
LGB&T+ and dementia
For lesbian, gay, bisexual, transgender + people, living with dementia can be even more challenging than for heterosexual people. Commissioners and providers of care and services must consider the particular needs of LGBT+ people and those who care for them to ensure these individuals receive good care and support..
Having sight or hearing loss makes things more difficult for the person with dementia, who is already working hard to make sense of the world around them. Regular hearing and sight tests, technological aids, environmental improvements, accessible information and communications can all make a big difference for people with dementia and sensory loss.
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.
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.
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.
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.
The Alzheimer’s Society Dementia guide (2013) 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 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 substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information.