Conference on faith, culture and dementia
In 2018 we had our first event to hear from people affected by dementia who are of faith, about both the challenges they have faced when interacting with their faith or cultural group since their diagnosis and the way in which their community has supported them. They celebrated work that is currently ongoing and exploring ways they can continue to support people on their faith and dementia journey in our communities.
The event provided the opportunity for change makers from across faith and cultural groups to unite together against dementia, to share ideas and to call on their faith leaders to show their support. Here are just some of the insights gained on the day:
Excerpts from our powerful speeches
Jeremy Hughes, Alzheimer’s Society ‘Faith is an anchor to who we are, so much of our personhood is held in our faith. This continues to be the case after a diagnosis of dementia’. ‘Faith is a resource, and should be utilised to support the two thirds of people living with dementia who do not feel part of their community. Small changes can be made to enable people living with dementia to continue to participate in community life’.
Rabbi Menachem Junik, Jewish Care ‘From a Jewish perspective, every person has a Neshama– a soul, a spark of G-d, which shines bright and illuminates within the person. It is our potential and that is the generator that sends signals throughout the entire human being. The challenge we face is that we have to see every person with dementia as a human being. Yes, their memory is not intact but there are times and moments where they feel joy, and when the spirit of life shines within them. The power of the Neshama – the soul, can never be extinguished and faith gives us the opportunity to connect to the essence of the person and see them with value and worth. …..A friend of mine whose grandfather is living with dementia told me how difficult it is for him to see his grandfather and especially to take his young children along. He felt it was difficult to have a proper conversation, as he is too far-gone, and his visits are less frequent at times. I could fully understand why, because it hurts when it’s so close to home, a family member. But when he saw how the various different traditions that I was able to perform with his grandfather impacted upon him, and how those memories bought him back to life, it put a smile on his face, and they reconnected on some level.’
Shelagh Robinson, Quaker ‘Dementia has a beginning a middle and an end, post diagnosis our faith communities can support us, help us to come to terms with the future, listen to our anger, our rage and fear until it becomes acceptance. Offer us the overlooked treasures of our faith to help and support us. When someone did this for me I was able to reframe the embarrassment of having to ask for help into an exchange of grace. And I can still do that. In the middle stages the enabling word is the most appropriate, we still have a great deal to offer, find it, and use it. But also let your love pour over us as the struggle gets harder and harder, love us for who we are not because we have dementia. And at the end? There is practical support of course, many people face dementia without family, with their greatest support sometimes being members of their faith community and practical support of all kinds is both needed and welcome. But there is something far beyond that. One of my abiding images from scripture is from the account of those three figures standing at the foot of the cross. Unable to do anything. Just being there, being alongside.’
Balvinder Kaur, Sikh Council UK ‘We found that the vast majority of care homes were not equipped for my mother’s faith needs; we struggled to find a place for her. There is such low levels of awareness in families too, fear and not knowing what to do can cause people to back off. But this can change, we need Gurudwaras to become dementia-friendly and support the community.’ 19 Activities from the day
Commitments for faith leaders
- Engage with a new understanding of personhood with people with dementia at the heart.
- I would like to see dementia friends sessions promoted throughout our community
- To engage my mosque Imam to raise dementia awareness within the community
- I would like our clergy to recognise the need for awareness long before it is an issue. ‘We never know who we will meet tomorrow’.
- Unite with other leaders in support of people affected by dementia
- Our leaders need to become aware of the expertise and experience in their faith communities- to both support and release them to create communities that are helping those living with dementia participate.
- For the Archbishop of Canterbury – Is there a lead bishop for people with dementia / dementia issues. If not appoint one!
- Train church architects and DAC’s in dementia friendly church buildings
- I would like religious leaders to enable sharing of best practice within their own and other faiths
- I would like to see them promote understanding of dementia
- I would like to see more dementia friendly services available
- I would like religious leaders to be more united in promoting spiritual needs of those who live with dementia and their carers
- I would like dementia friendly prayer areas and greater support and awareness for people with dementia and their families.
- I would like to see every church in our area more aware of dementia and using opportunities to engage with those living with dementia in the community 20