Dementia Support Line
Lived Experience Advisory Panel Report for July 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 July 2023
In July, the LEAP panel members were asked to discuss their coping strategies and the support they had found helpful in managing the challenges of living with dementia.
A summary of these discussions can be found in the sections below, including panel members’ experiences and recommendations for change.
A total of 26 people, including 18 people with dementia and 8 carers attended the four separate LEAP meetings in July, 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 July 2023.
- What coping techniques have you found helpful in managing the emotional impact of dementia?
During the panel discussions it was apparent that most people with dementia and carers rely heavily on family and friends to cope emotionally. Most carers said that Dementia Jersey has filled the many gaps they would have expected the Memory Assessment Services (MAS) to assist them with.
People with dementia commented as follows:
“Attending the Meeting Place Project has helped me significantly, I not only have friends there, but I am also learning to keep my brain active.”
“I write everything in my diary so I can keep track of everything I need to do.”
Carers commented as follows:
“I find that you learn techniques that work for you but then the person you are caring for has a change in their dementia and the technique doesn’t work for you anymore. I now go from hour to hour which helps me to cope emotionally.”
“Going to the Dementia Jersey’s carer meetings really helps me.”
“My family and friends are a great support, without them I wouldn’t be able to attend meetings, go for walks or have a break.”
- Are there any specific self-care practices that you prioritise to support your well-being while living with dementia?
People with dementia commented as follows:
“I attend as many Dementia Jersey activities as possible and feel the more awareness about dementia that I can share the better for me.”
“I ride my bicycle around the Island.”
“I make sure that I swim three times a week.”
“I feel guilty that my partner has to do everything for me, so I try to set the table before meals.”
“I eat a healthy diet and have stopped drinking alcohol.”
- How do you cope with the changes in memory loss on a daily basis?
The following subjects were discussed by the panel:
The importance of daily routines but also the need to keep in mind that should the routine not work, changes may need to be made.
The importance of time for relaxing as part of the routine because the brain gets tired.
Having a variety of activities and stimulation in the day, such as meeting up with friends or going out to the shops to stop boredom setting in.
Remaining calm and trying not to take things too personally and when this isn’t possible trying not to be hard on yourself.
Accepting a dementia diagnosis. Panel members thought getting a diagnosis was challenging but felt that once there was acceptance stress levels lessened immediately.
- What strategies do you use to adapt and navigate daily challenges, such as maintaining routines, managing medication, or organising tasks and activities?
In response to this question people with dementia offered the following comments:
“I can’t cope with my medication, so my doctor arranges for my medication in blister packs, now I manage my own medication taking daily and don’t forget to take it when I am supposed to.”
“My partner put a white board in the kitchen and in the evenings, we write up the next day’s routine and this helps me feel included.”
“I rely on my partner to do everything for me because I am afraid, I am going to forget something and cause a problem. I know this isn’t what I should be doing but I have less anxiety this way.”
When discussing the same question with carers many shared the difficulties they encountered when managing money or when encouraging a person to engage with tasks and activities. The said that the person they cared for was sometimes reluctant to ask for help and in the early stages had tried to ‘fake it” covering up errors which caused more stress and friction.
Carers also said that accepting changes in abilities and adapting coping skills could be very tiring for them when having so much else to deal with.
They also said that keeping in mind the importance of approaching one task at a time and “picking your battles” was important.
- What techniques have you found helpful in managing sleep disturbances or changes in sleep patterns associated with dementia?
During the panel discussions carers felt that sleep disturbances added to the pressures of caring 24/7 for a person with dementia, though most people with dementia did not think their sleep patterns had altered since their diagnosis.
Carers commented:
“Wellbeing is affected greatly, and one never seems to be able to catch-up on sleep.”
“You feel like you are running on a hamster wheel!”
- What advice or tips would you offer to others living with dementia who may be seeking coping strategies and support? What has been most valuable in your own experience?
In response to these questions, people with dementia commented:
“It is important to focus on what I can still do for myself, not just what I can’t do.”
“Don’t treat me like a child or think I am now stupid; I have feelings like everyone else.”
“Ask for help and keep active.”
“A good laugh is the best medicine and don’t be afraid to cry.”
Carers said:
“Having lasting power of attorney for finances and health in place early on.”
“Attending the carers meetings offered by Dementia Jersey.”
“Remembering you aren’t alone and keeping the diagnosis a secret may lead to more life pressure and stressful situations.”
- How do you manage and cope with the social aspect of living with dementia?
Most carers on the panel felt their lives were on hold and although keeping social circles was not easy it was very important.
Some attend their own lunch groups which meet whenever they are all available.
One carer said that relying on family was the only way they managed to keep caring for their partner.
Some found that going out with the person with dementia to restaurants could be challenging but this could be managed by not going during busy times and accepting that on bad days you may have to go home early.
People with dementia on the panel did not add any comments in response to this question.
- Have you had to cope with any potential stigma associated with dementia?
Most panel members, both people with dementia and carers, said that at some point they had had to cope with the stigma of dementia which they believed was mainly due to people not understanding the disease or just not caring because it didn’t affect them.
A carer commented:
“With the help of Dementia Jersey there is a lot more awareness in the community which is helping with the stigma.”
Recommendations
While there was a considerable amount of engagement during these LEAP meetings, and many suggestions were made throughout, particularly in point 6 above, no formal recommendations were noted.