Dementia Support Line
Lived Experience Advisory Panel Report for December 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 December 2023
In December the LEAP panel members were asked to share their experience of the impact of winter which although different for everyone, often involves changes in routine, increased isolation, and potential safety concerns.
A summary of these discussions can be found in the sections below, including panel members’ experiences and recommendations for change.
A total of 42 people, including 33 people with dementia and 9 carers attended the four separate LEAP meetings in December, 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.
Understanding the lived experience of people with dementia and family carers during winter is essential for providing appropriate support and care.
- To facilitate the discussions, we first asked people to share something about their experiences of winter when they were younger.
During the discussions members shared their memories about winters when they were younger, about the snow, feeling cold, sitting around the fire with family and not in front of a tv, clearing the football pitch for a game, sledding with a heavy sled Dad had made, snow ball fights, school been cancelled when it snowed, roasting chestnuts on an open fire, putting rope on the car tyres for more traction, wearing overshoes so your feet and good shoes were protected.
Some members shared that during the war with the constant bombing they were evacuated in the middle of the night to places where there was no heating or wood for a fire and in the morning, you had to scrap the ice off the inside of the windows.
These are some memories shared by people with dementia and family carers.
“My favourite was skating on the river with my friends. You never felt the cold when you were young.”
“I lived in Australia when I was young and preferred winter to summer because winter was cooler.”
“Happy memories – Dad came home early from work at 4pm instead of 7pm and would play with us in the snow.”
- We then asked people to share their favourite winter traditions which included the following.
“Attending midnight mass on the 24th of December and then going home and being allowed to open one Christmas gift before going to bed.”
“I love Christmas cake baking and hiding the pennies in the Christmas pudding.”
“A new tradition is Elf on a Shelf which my granddaughter absolutely loves. My daughter must hide an elf in a part of the house and the elf has to be doing something bad.”
“During the war we didn’t have tv so we would sit round the fire and play games or read.”
“Around Christmas we were taken to the hospital by our parents to share the Christmas spirit with people not able to be home for Christmas.”
“Plucking the turkey and sitting by the fire with my family.”
“I love singing and enjoy the carol service at the church.”
- As we get older, and the shape of our family changes, the activities we enjoy may also change. We were therefore interested to know what panel members now enjoyed doing during winter.
The panel agreed that it was important to find new ways to stay active during winter, to keep muscles working, to help boost the immune system and to improve mood and mental well-being.
Less active members said it was important to them to keep doing the things they loved which included doing jigsaws, puzzles, art, watching horse racing on tv and reading.
- Because we know that some people’s mood can be affected by the darker and shorter days of winter, we wanted to know if this was also apparent for people with dementia and their family carers. We therefore asked all panel members if their mood was generally lower in winter.
The following were some of the responses shared during the meetings.
Some people with dementia commented:
“Yes, especially when it rains and is very windy for days on end and I can’t get out for my walk.”
“We visit our neighbours and check on each other especially in winter because not everyone can cope well with the darker days and not so good weather.”
Some carers commented:
“Only January and February affect me in winter, those two months drag on and Spring seems like it is never going to come.”
“I find I get depressed in winter and then lack motivation to do anything. This makes me feel worse.”
- Discussions then continued around winter clothing.
The panel discussed clothing that they thought essential in winter but noted that because the quality of fabrics had improved over the years, they generally wore fewer clothes that were specifically for winter and felt warmer than they remembered feeling when they were younger.
The following were comments made by panel members with dementia:
“I am a farmer and wear my wellington boots summer and winter. My family says it embarrasses them.”
“My parents used to make up food and clothing parcels for people less fortunate who were cold in winter.”
- Because some people with dementia may not feel changes in temperature in the same way or may not be able to dress themselves as they would like in response to feeling either too hot or too cold, we asked the panel to share experiences of dressing, particularly in colder weather.
While no one with dementia on the panel said they had any issues with this, some carers shared the following experiences:
“My partner’s hands and feet were always cold. I bought a hot water bottle and thermal socks which worked well to keep them warm in winter.”
“I assist my partner with dressing and put a choice of two appropriate seasonal items out for when they get dressed. This works really well and there is never an argument.”
- Following this we were interested to know if panel members usually made alternative plans for winter and if these had changed in any way since the diagnosis of dementia.
Some people with dementia said:
“Yes, we go to Borneo for 3 months in winter which we have been doing this for 25 years. I wouldn’t cope with winter in Jersey if we didn’t go every year.”
“I am Scottish and go to my daughter in Glasglow to celebrate Hogmanay (New Year).”
“I love Pantomimes and enjoy taking my grandchildren.”
One carer said:
“I always facetime my family in Spain on Christmas Day and New Year.”
- Because we know that more accidents can happen as people get older, that dementia can affect people’s mobility and their perceptions of hazards, and seasonal illnesses can affect older people more than younger people, we asked panel members if they took any extra precautions to stay safe during winter.
Some carers commented:
“I always have my yearly flu shot and now I make sure I also have my covid shot at the same time.”
“I keep a stock of tinned food in my cupboards just in case I can’t get out to the shops.”
“I am mindful of telephone scams more over the Christmas period.”
Some people with dementia commented:
“I have always checked the roof in summer in preparation for the winter rains.”
“When I was young, we had to make sure the paraffin heaters were filled in time for
Winter.”
“I don’t go out in winter because I am afraid of slipping with my walker and I don’t
want to use a wheelchair.”
- We then asked if people’s diet changes during winter.
This topic had all panel members talking about their favourite winter meals including soups and casseroles, which some described as comfort foods. Some panel members then moved the discussion on to the changes they had introduced in their diets to ensure they ate healthier foods because of the dementia diagnosis.
- The question we then asked concerned the support Dementia Jersey offers during the winter and if this was not sufficient, what additional services the panel would recommend.
The panel discussion was however mostly centred around the government’s services with most panel members saying these fell short of what people needed. They added that they believed it was not Dementia Jersey’s responsibility to provide support and activities for people with dementia and their families. All panel members then expressed their gratitude for the services Dementia Jersey offers and did not feel anything was lacking in their provision.
- Finally, to end on a seasonal note and a lighter subject, we asked the panel to tell us what songs or music reminded them of wintertime, and then although we did not expect or request the panel actually sing these, some members did break out into song!
Favourite Christmas tunes included:
Jingle Bells, Away in a Manager, White Christmas, Auld Lang Syne, Baby It’s Cold Outside, All I want for Christmas is You, Have Yourself a Merry Little Christmas, O Holy Night, Rockin’ Around the Christmas Tree, and Last Christmas.
Recommendations
Although there were no specific recommendations noted during this LEAP meeting, there are some subjects for consideration embedded in the above notes, including: the benefits of reminiscence; maintaining opportunities for people to attend faith activities if these have been important to people in the past; and facilitating opportunities for people to engage in activities which in the past have been important to them.
Related to this, as most panel members wanted to take the opportunity LEAP offered to voice their opinion that it should be the government supporting them better, this will be a subject for LEAP’s future consideration.
And finally, from the discussions this month, it seems that people with dementia and their carers may experience increased levels of depression in winter. As this outcome should not be ignored or considered only as a symptom of progressing dementia, LEAP will return to this subject again in future meetings.