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Community come together to talk about dementia

In Dementia Action Week, Irish in Britain made an open call to people from St Mellitus Parish community and Community Language Support Services, a refugee support charity with an office within the church building, to come together to talk about dementia in the local community.

Zibiah Loakthar, Cuimhne Champions Coordinator, writes,

Dr Mary Tilki gave a short talk about dementia to the church community after the mass on 20 May and we invited people to a drop in training on Saturday 2 June 2018.

On Saturday, 25 of us came together for in depth discussion and learning about memory loss and dementia. This included people caring for relatives with dementia in their homes, and many in the group shared experiences of supporting friends and family members with memory loss. Others came along to find out more about what we can all do to help support people within the community.

We spent time discussing different signs of dementia and what it might feel like to lose our memories. People shared experiences of supporting family and friends with dementia and these highlighted how dementia can have an impact on individuals in very different ways.

For instance, some people with dementia might eat less than usual. This may be because they forget to eat, or forget how to prepare food, or lose their sense of smell and interest in food. Changes in visual perception caused by dementia may mean people cannot see well unless there is colour contrast and do not notice clear water in a clear glass in front of them or cannot see whitish food like fish, pasta, cauliflower, cheese and potatoes food laid out on a white plate. 

On the other hand, some people living with dementia might forget they have already eaten recently and so eat lunch twice, or put sugar several times in their tea, forgetting they have already added it.

Group discussionAs a group we identified loneliness and social isolation as both key risk factors for dementia, and as experiences people can have due to dementia. Embarrassment about entering social situations where one’s memory loss might be discovered and family member reluctance to invite relatives living with dementia to social occasions because of concern about the way dementia may make people behave, can mean that people find themselves socially excluded. 

This can exacerbate depression and loss of confidence, further keeping people away from social settings. It may not only be people living with dementia who become isolated, but their partners, friends and relatives caring for them too. Memory loss can make people insecure. Carers may go out less, worrying that the person they care for will become too distressed if the carer leaves their sight for long.

Conversation and social interaction stimulates the brain and social activities are thought to help prevent or slow down the onset of dementia. We discussed how together as a group we might be able to set up some social activities, such as a coffee morning, or knitting group, or jigsaw puzzle and quiz afternoon, to bring people together.

There was a recognition that family members do not always feel comfortable talking about dementia or know how to start a conversation about it, and that sometimes people with memory problems seem to drop away from community activities such as church services. People suggested it would be a good idea to put further information into the parish and community newsletters, reach out to people who might have drawn away from community activities, and keep talking to people to help break down the taboos around dementia.

Thank you so much to Canon John O’Leary for hosting the workshop in the church hall and encouraging people from the parish to attend, and to Wezenet Haile and Mohammed Maslah for encouraging CLSS members to attend, helping interpret some of the ideas into Tigrigna, Arabic and Somali and help with coordinating refreshments for all those not fasting during Ramadan.

And a big thank you to participants Amina E, Angela M, Bakhita O, Barbara C, Breda, Carine Z, Christine H, Christine 0, Geraldine, Halimo A, Halimu J, Houria, Canon John O, Julia, Maryan G, Mohamed M, Rahwa A, Rory M, Seonad D, Tina B, Tony K, Tony and Wezenet H, for volunteering valuable time on a sunny Saturday afternoon to learn more about dementia and share ideas for individual and group action.