Dementia Support Line
Lived Experience Advisory Panel Report for April 2023.
About Dementia Jersey’s Lived Experience Advisory Panel (LEAP)
This Panel brings together people with dementia and others with lived experience of supporting or caring for a person with dementia, to discuss issues of significance related to living with a diagnosis of dementia.
The Panel meets quarterly, proceeds with an agreed subject for discussion, and because of its advisory purpose, the outcomes of discussions and the recommendations of the Panel are documented and disseminated to inform, as appropriate: government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.
Subjects for discussion are submitted either by Panel members or from other interested parties via Dementia Jersey’s staff.
LEAP is headed up by our Dementia Advisor Team.
Please contact Dementia Jersey if you would like more information about our LEAP.
Email: info@dementia.je
Call: 723519
Overview of the LEAP meetings held in April 2023
In April the LEAP Panel members were asked to share their experience with Physical and Social activities.
A summary of these discussions can be found in the sections below, including Panel members’ experiences and recommendations for change.
A total of 16 people, including 8 pwd (person with dementia) and 8 carers attended the three separate LEAP meetings in April, facilitated by Dementia Jersey staff.
All information provided below is anonymised and non-specific gender pronouns have been used.
Outcomes of the LEAP meetings held in April 2023.
- Why is it important to keep physically active?
During the Panel discussion it was noted that majority of people believe that physical activity is one of the most important things you can do to keep healthy. The Panel discussed how physical activity helps your brain and heart health, manages your weight, strengthens bones and muscles and this in turn improves the ability to keep on doing the activities.
Some said that they felt worse when not doing any physically activity and that you don’t have to do anything over the top to feel better. A simple walk round a garden can help you in so many ways.
- Who in the group still does exercise?
PWD: “I walk into town most days and if the weather is nice, I will walk home”.
PWD: “I don’t do enough as I am very lazy. Some side walks aren’t easy to walk on because they aren’t flat, and I worry I am going to fall”.
PWD: “I have kept active throughout my life and have just carried on, I can’t always do it all, but I do my very best”.
PWD: “I have a watch that tells me how many steps a day I have done and the family challenge each other so it makes it a lot of fun. I am often the winner because I love walking”.
Carer: “I used to do a lot of exercise, now I am too tired to do anything. This affects me negatively”.
Carer: “I manged to walk every day which is my “me” time. If I didn’t have this daily activity, I would not cope at all”.
- What type of physical exercise do you take part in and how often?
PWD: “I go for walks in the country and sometimes on the beach”.
PWD: “I love doing tai chi at the local Parish Hall, they have a class once a week”.
PWD: “I play golf, can’t manage all the holes but I still go and do what I can”.
Carer: “I used to do all different types of activities i.e., tennis, golf and bowls. Been a primary carer takes up a lot of my time so now I walk if I am not tired. I really miss the activities”.
Carer: “We try and go for walks every day and sometimes I manage a swim in the summer months”.
During the Panel discussion it was noted that carers are needing more time to do activities to cope better. Some mentioned that their lives seem to have been taken away too early however would never resent their caring role. At times when things get hard it would be nice to know you could go out and do an activity to help you with the emotional and physical impact that Dementia brings.
- Do you take part in activities offered by DJ?
During the panel discussion PWD said they took part in most activities offered by DJ (Dementia Jersey). Some shared that the activities at DJ were the high light of their week.
PWD: “I take part in the MMP (Meeting place project) and walk ‘n’ talk DJ (Dementia Jersey) activities”.
PWD: “I have a diary that I list all my daily activities with DJ. I try and do as many as I can”.
PWD: “Splash chat and art are my favourite”.
Carers: “I enjoy the carer meeting but can’t always find someone to assist while I go out”.
Carers: “I say I am going to go to the carer meetings but then I am too tired, so I just stay at home”.
Carer: “I feel guilty for going out to a carer meeting”.
- Are your preferred activities still accessible, and have you started any new activities?
Carer: “No, I can’t access any of the activities that I previously did, I am lucky if I can get out for a short walk”.
Carer: “I can access the activities but have no energy by the time I have finished all the daily chores”.
Carer: “Since my partner was diagnosed everything revolves around them and what activities they can cope with so as to ensure they have a good day”.
PWD: “I used to play football, can’t even run never mind kick a ball. I really do miss it very much”.
PWD: “I have started playing petanque and have a lot of fun. I do this with DJ”.
PWD: “I live in the country and due to the limited bus service, I don’t get to the activities I want to”.
During the Panel discussion most people felt that Liberty Bus need to run more buses to accommodate those who live in the country. Some felt that there would be more people attending activities if they could get to them, especially those who don’t have family on the island or have stopped driving. One person was upset that Parish Halls weren’t been used enough and suggested that local Parishes utilise them more so that the locals don’t have to catch a bus to do an activity.
- Why is it important to keep socially active?
During the panel discussion it was agreed that social activities are important for mental health. Some felt that living alone and not having someone to talk to daily makes you depressed and then before long you don’t go out at all. Others felt that going out for meals make them feel happy inside. A PWD commented: “buck’s me up inside”.
- What type of social activities do you take part in and how often?
PWD: “I go to choir at my church, afterwards we have tea and coffee and a chat”.
PWD: “Meeting up for lunch with friends once a week is my favourite”.
PWD: “I come to the MPP once a week and enjoy the topics we discuss and like to chat to my friends I have met there”.
PWD: “Having special dinners with family are my favourite time”.
Carer: “I miss socialising with friends and going out”.
Carer: “Once a month I meet my friends for brunch, we have a wonderful time. I only wish it could be more often”.
Carer: “I go to yoga twice a week it is my favourite place to catch-up with friends”.
- How do you feel after you have taken part in physical or social activities?
Carer: “Like I can take on the world, I am also not so inclined to get upset when the day doesn’t go as planned”.
Carer: “It makes me feel like I have been to a day spa”.
PWD: “Great, if I win at petanque”.
PWD: “Happy, because I get to talk to people who have dementia like me and don’t have to feel embarrassed when I can’t find the right words”.
PWD: “I don’t feel so alone”.
PWD: “I don’t feel so ashamed of what I have”.
- What barriers have you experienced when attending physical and social activities?
The panel discussed the bus service been an issue for people who live in the countryside. Some felt that getting to activities difficult because family members are busy with their lives and one can only ask friends now and again, you don’t want to be a nuisance.
The need for more blue badged parking spaces was discussed and the need for more disabled toilets. Some expressed that they lacked motivation and energy.
At the end of the Panel discussion most of the PWD expressed that they enjoyed the LEAP session, it helps them feel like they have a real say and that finally “someone” is listening.
Recommendation:
- Bring back Tai Chi.
- Get groups of people back going to church so we can meet there.
- Run better bus services for the people living in the country.
- Have talks not just for carers but for PWD i.e., gardening, birds, guide to safe walks and Sunflower lanyard wearing.
- All Parishes to work together and not separately.
- DJ to run a bus service so that more people can get to activities.