Statement 5: People with dementia are enabled, with the involvement of their carers, to maintain and develop relationships
What does this mean for care providers ?
Relationships make life meaningful they help sustain us and can increase our enjoyment of good times. Having strong relationships can help a person hold on to their identity and results in greater wellbeing as dementia progresses. But for many people, a diagnosis of dementia places a stress on relationships and results in a loss of friends, and the move to a care home can compound this.
For people being supported at home, care providers can be a real lifeline. They provide a link with the outside world, can develop a bond with the person living with dementia and help reduce the stress felt by carers. Having some knowledge as to the support and activities available in the local community, and sharing ideas about how friends and family might stimulate interests and activities will be very valuable.
For people living in care homes, care providers can make a difference to the quality of their relationships. Family and friends may need encouragement to visit, may welcome ideas as to what they can do together, and may value the presence of specific resources to use during their visits.
All care providers can take a creative approach to helping maintain and develop relationships. This could include working with families to identify which relationships have been particularly important to the person; fostering a team spirit with friends and family; encouraging the presence of children or animals; and developing links with the local community.
Why is this important to carers ?
Maintaining and developing good relationships is vital for everyone – and yet for people with dementia and their carers this can be difficult. There are lots of reasons why this might be so. Some relate to the illness itself: such as difficulties with communication and memory problems undermining confidence and placing a strain on relationships. Other things relate to how society more generally responds to dementia. For example, lack of awareness and stigma can lead to practical problems (such as difficulties using a cash machine) and also undermine friendships, leaving people with dementia and their carers feeling isolated and lonely.
There are a growing number of ways to support people with dementia and carers to continue to maintain and develop relationships – either together or as individuals, whether in person or through ‘virtual’ communities.
How can I and other people keep the communication going with my relative?
There are certainly things we can do to improve how we communicate with people with dementia. It will depend on the individual though – and on how advanced their dementia is. People in the earlier stages may not need any help, but later on the person may not be able to communicate in words at all. The SCIE Dementia Gateway website has lots of information on this topic: start with these two sections, ‘Communicating well’, and ‘Getting to know the person with dementia’.
The process of getting to know a person with dementia for example for a volunteer visitor who is just starting to pop in regularly can be made more difficult because of problems with memory and communication arising from the dementia. Having information to hand about a person’s life history can really help to prompt conversation: gather together details about the person’s life (such as significant events, favourite activities and leisure interests, likes and dislikes), and include photos too. Some people keep this kind of information together in a folder or box (often called a ‘memory box’).
How can I support my relative to continue with their friendships and relationships?
Ideally, if a person with dementia is supported to maintain their regular interests for example, continuing to be a member of a local club or community group this is a valuable way of keeping day-to-day life as normal as possible. The dementia on its own shouldn’t place too many limits on an active life in the early stages. Again, information about local leisure activities should be available via the local authority or a voluntary organisation.
Over time, it may feel more suitable and comfortable to join in with dementia-specific activities and groups as a way of making friends. You can find out about local social groups for people with dementia and their carers by looking at Dementia Web, the Guideposts Trust information service that will identify information about services and groups in any given local area.
Some people will enjoy using the internet as a way of linking up with other people in a similar situation whether they are living with dementia themselves or they are a carer. The Alzheimer’s Society’s Talking Point forum is a long-running and substantial online community for both people with dementia and carers. DAS International (Dementia Advocacy and Support Network International) is another example. Other people will find support and link with others through general social media forums such as Twitter and Facebook.
What sorts of social groups and networks are available for people with dementia?
Some local support and social groups will be targeted specifically at people with dementia, others will be just for carers, and some will be for both it all depends what is available in any particular area, and what works best for both you and the person with dementia.
Some have a specific activity focus – such as reading groups for people with dementia, or singing groups for people with dementia and carers, or walking groups for people with dementia. Through doing this activity, participants can develop new relationships – or free up carers to maintain their own, separate relationships.
Some may have a specific dementia focus – such as ‘memory cafes’, which are springing up in many places around the UK. These are welcoming social venues where people with dementia and their carers can socialiseand also find information relating to dementia. The online Memory and Alzheimer’s Cafes UK Directory lists all memory cafes in the UK – so start by looking here. Another example might be short-term education and information sessions about dementia, often offered to people with dementia and carers at the point of diagnosis, but where support is offered to continue to maintain relationships with other group members after the course has formally ended.
The Dementia Engagement and Empowerment Project (DEEP) network is another starting point – DEEP is a network of local groups around the UK for people with dementia who have come together to support one another and improve dementia services and support. The DEEP website lists all groups linked in with the DEEP work – and is another good starting point for finding people in a similar situation.
Do any organisations specialise in support for family carers of people with dementia?
Dementia UK provides the Admiral Nurse service. These are specialist mental health nurses who provide emotional support to help family carers understand and deal with their feelings, as well as practical advice and information on dementia, referrals to other appropriate services and liaison with other professionals.
There are only around 100 Admiral Nurses working in the UK. However, Admiral Nursing Direct is a national helpline and email service, provided by experienced Admiral Nurses, and is for family and professional carers, people with dementia and those worried about their memory. It gives practical advice and emotional support to anyone affected by dementia. Contact the helpline by calling 0845 257 9406 or emailing firstname.lastname@example.org
The Dementia Friends initiative includes an opportunity to become a dementia champion and help others understand what it’s like to live with dementia , as well as identify actions that can be taken to help build dementia friendly communities. Training is provided.
‘Keeping active and occupied: Involving family and friends’ on SCIE’s Dementia Gateway provides some tips for care staff about how to help maintain the relationship between people with dementia and their friends and family.
Brown’s Field House is a video showing the wide range of activities that residents with dementia enjoy at a care home in Cambridge.
The Dementia Engagement and Empowerment Project (DEEP) has been working since 2011 to identify and bring together groups of people with dementia across the UK. These groups meet for a range of reasons, such as working to improve dementia services and policies, and for peer support too. DEEP now has a website which lists all the identified groups in the UK and gives contact details. DEEP is a joint project between the Mental Health Foundation, Innovations in Dementia, supported by the Alzheimer’s Society and funded by the Joseph Rowntree Foundation.
The internet-based Dementia Advocacy and Support Network International (DASNI) launched in 2000 and since this time has been working to provide a forum for exchange of information, encourage peer support (such as local groups and internet links), advocate for services for people with dementia, and assist people to connect with their local dementia organisation. Approximately a third of members have dementia. DASNI members have made presentations at Alzheimer’s Disease International conferences and speak and publish widely on dementia.
The Guideposts Trust charity's information service, Dementia Web, includes a Dementia Information Prescription service, which provides detailed information about services and support available in 19 local areas - and this list is growing all the time. If an 'Information prescription' does not exist yet for a particular area, staff will create an individualised list with up-to-date information about services in a particular local area on request - begin by calling the Dementia Web national telephone helpline on 0845 1204048.
This report is the second of what is to be an annual report from the Alzheimer’s Society capturing progress on how well people are living with dementia. A key theme from the 2013 report is the difficulty that people with dementia face in maintaining relationships after a diagnosis of dementia. The report makes a series of recommendations for how to tackle the problem of loneliness among people with dementia.
This guide from Carers Pathways provides information about setting up a memory café. It includes a set of good practice guidelines and checklists that cover everything you need to put in place when setting up a cafe.
This film, Memory Cafe, is available to view on the NHS Choices website shows how memory cafes offer people with dementia and their carers the chance to socialise and share information. In this film, one group talks about what the experience means to them and how the specific activities offered at the cafe benefit them.
Talking Point is the Alzheimer’s Society’s online forum for people with dementia and their carers, family and friends. People are welcome to use the forum to discuss all aspects of dementia, and as a place to meet others in a similar situation and seek support. Talking Point brings together people with similar needs and interests, such as hosting a forum for people under the age of 65 who have dementia and their carers, and a forum for gay and lesbian carers.
The Alzheimer’s Society website contains an interactive map where users can click on their relevant region or enter their postcode to find out about Alzheimer’s Society services in their area – which can then be used as a starting point to finding out about the wider range of dementia-specific groups and services (including support for carers) within a district.
This online independent directory enables users to search for their nearest memory cafe and to find out contact details. The website includes an interactive map and a search function. It has been set up by Andy Francis, a family carer who has been involved with memory cafes in south west England.