Dementia: changing ‘seldom heard’ to ‘seen and heard’ involves us all
As Livability seeks to help churches respond to the challenge of loneliness and social isolation, we are acutely aware of the reality that living with dementia can begin to isolate a person from their community and it becomes harder to know how to support them. If this weren’t challenge enough, a person living with dementia and their carers may additionally belong to a seldom heard group which may isolate people further.
To address these often hidden barriers, September saw the launch of the latest campaign from Dementia Action Alliance, “From Seldom Heard to Seen and Heard”. With over 150 national organisations – of which Livability is one – Dementia Action Alliance is calling on organisations and individuals to tune into the needs of people not only living with dementia but in particular those who are also part of a seldom heard group.
But what does “seldom heard” really mean, and is it just another way of saying “easy to ignore”? It’s an uncomfortable suggestion that needs to be addressed. Until we engage with the reality that we may find some people difficult to help or difficult to love because we aren’t quite sure how to relate to them, we will never be able to move beyond that into a space of acceptance, let alone a place where we can love as well as be loved.
Three key seldom heard groups identified by the campaign are people with learning disabilities, the prison population, and the LGBT+ community. These three groups challenge assumptions of a majority view, or that there is such a thing as the “typical needs” of people living with dementia. It will always be true that whatever group a person living with dementia identifies with, “When you’ve met one person with dementia, you’ve met one person with dementia” (Tom Kitwood).
Beyond all these groups, there is another group that exists as something of a paradox, a group that isn’t a group at all. It’s all the people who have no-one, people living alone with dementia who feel that they will only ever be unseen and unheard.
Tuning in to people who are not like us, who we feel that we have nothing to relate to and have no shared interests, let alone common goals, is hard. It is certainly not automatic, but that doesn’t mean it shouldn’t be a goal, for individuals as well as communities.
So what can we do to tune in to people who are living with dementia and are seldom heard, who feel overlooked, and forgotten? We can start by looking out for them and going out of our way to listen to them as individuals, without assuming in advance what might be a help. Sounds simple? Perhaps. C.S. Lewis said that “to love at all is to be vulnerable” and it may also be true that “to listen at all is to be vulnerable” if we fully commit to understanding the richness and challenges of life from another person’s perspective.
If you are part of a church or organisation you can also become a member of Dementia Action Alliance, read the reports of the “From Seldom Heard to Seen and Heard” and support the campaign by making a pledge. Every pledge, starting with a commitment to really listen can be a huge help to a person living with dementia. We may even find that we aren’t as different as we thought we were, as we share our own inner struggles and our own need to be seen and heard.
As Jean Vanier writes in his book Befriending the Stranger:
When you spend the whole day listening to people, you learn a great deal.
Much more than from books!
Books of course can be useful and interesting,
but living words coming from a human heart are more alive,
precisely because they come from the heart, a living heart,
the place where God dwells,
the place also of our inner struggles.
This autumn the Community Engagement team is beginning to develop a Biblically-based, practical resource to support those who are living with and affected by dementia. If you would like to find out more about the resource, or have some suggestions for what you think the resource should include, please get in touch at firstname.lastname@example.org
Charlotte Overton-Hart is Livability’s Associate on Dementia. Charlotte has a background in arts and humanities and adult social care and is currently a Reminiscence Facilitator, running sessions both one to one as well as with families and groups. She is developing a tool to help people living with dementia to tell their life story, and is collaborating with a community allotment to run dementia-inclusive gardening sessions throughout the year. Charlotte is currently studying for an MA in Bibliotherapy which explores how stories, poetry and literature can help people who are living with dementia.