Dementia Support Line
Lived Experience Advisory Panel Report for December 2022
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 monthly, 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 2022
In December the LEAP Panel members were asked to share their experience of Retail Christmas Shopping.
A summary of these discussions can be found in the sections below, including Panel members’ experiences and recommendations for change.
A total of 20 people, including 12 pwd (person with dementia) and 8 carers attended the three 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 December 2022
- Is there enough space to move around at Christmas time in the shops?
PWD: “I find a quiet time, earlier in the day and go shopping then”.
PWD: “I go when the kids are still at school or will wait till they are on holiday”.
PWD: “I notice that children are out of control whizzing up and down crashing into the elderly”.
PWD: “Yes, I find it quite easy, I also don’t have a problem with my mobility and people are helpful if you can’t see what you need, in the Co-op in particular. I look for a person with a uniform or ask people behind the counter”.
The panel discussed safeguarding and it was noted that retail outlets tend to pack their overflow merchandise in all available spaces making walking down aisles a hazard or difficult to push a wheelchair. It was pointed out by a panel member that the Co-op is always looking for suggestions to improve their service to people so we could always use this facility to make suggestions.
- Do you find it too noisy or too many bright lights?
PWD: “The noise isn’t a problem because I take my hearing aids out”.
PWD: “I battle with music been too loud”.
PWD: “I find it too loud I can’t think properly”.
PWD: “I don’t like Christmas carols”.
PWD: “Noise is always an issue; café background music can be very difficult especially coupled with the flashing Christmas lights”.
In a panel discussion hearing aids were the main issue when doing Christmas shopping, not necessarily just linked to Dementia. A panel member commented that hearing aids say they cut out the “echo” when using them, don’t usually do what they say on the box. The panel discussed how this could be the case at any time of the year. It was felt that Christmas was especially bad as all outlets have music playing mostly with the Christmas lights flashing, these together are what makes shopping worse. A panel member commented that they had not received advice on the effects of wearing a hearing aid or having hearing loss when diagnosed with dementia. It was noted that this information would be very helpful and needed to be shared with the Memory Clinic and the Hearing Centre.
A carer pointed out that both Waitrose and M&S had an app which is in real time that you could use to check to see if a particular supermarket was quiet or busy before you headed to that shop.
All panel members thought this was a good idea, however, may not be suitable for people who don’t have suitable mobile phones or trained to use their mobile in this manner.
A panel discussion followed about Christmas decorations and especially flashing lights in care homes, as this was currently an issue in one of the homes. A carer asked if Dementia Jersey could assist care homes with ideas for Christmas lighting and decorations to ensure the home is dementia friendly over the Christmas period.
- Do you have problems choosing presents?
PWD: “I have a think of what the family would like and then have a quiet walk around the shops for ideas”.
PWD: “I haven’t started my shopping yet”.
PWD: “I have started thinking about it, there is a lot of trade, more so than previous years”.
PWD: “My Christmas routine is organised by my wife. She tells me what to buy each person. The idea is that we don’t spend too much money, a bit like a secret Santa”.
- Do you shop on Amazon?
PWD: “Yes, I make the choices and my wife helps me with the payment online”.
PWD: “No, I prefer to send money then the person can buy what they want”.
PWD: “I don’t know how to use Amazon”.
Carer: “I am not able to leave my partner alone so have resorted to shopping on Amazon”.
- What about all the queues at Christmas do you find it difficult waiting.
PWD: “No, I am very patient I don’t mind waiting in a queue”.
Carer: “I think the shops should have what the bank have, more service counters and tills open for people during the busy times”.
PWD: “I am not happy to queue that’s why I have someone do my Christmas shopping for me”
The panel discussed how people queue jump and when another till is opened people from the back of the queue rush to the till which makes the wait in the queue longer.
- Do you find the shop attendants helpful if you need assistance and do you wear a sunflower lanyard?
PWD: “I feel confident enough to ask for assistance when I need it”.
Carer: “M&S always put themselves out when I have asked for assistance”.
PWD: “I wear my sunflower lanyard and have always found asking for assistance easy”.
PWD: “Wearing the lanyard when out shopping didn’t make a real difference, no one approached me to assist”.
PWD: “I don’t wear my sunflower lanyard when I shop, I only wear it when I travel and then it is very useful”.
PWD: “Where can I get the Sunflower lanyard from as they used to be available at the Grande Marche Co-op. You could borrow one to use while shopping at one point but not lately”.
The panel discussed shop assistances’ knowledge of the sunflower lanyard and how more awareness could be shared with young people. The panel agreed that when wearing your sunflower lanyard people were much kinder and willing to assist you.
The panel discussed if people with dementia should be allowed to go to the front of the queue, or if staff could provide another till. Some panel members were not sure about going to the front of the queue just because you have dementia. All agreed it would be better if the shops opened more tills to assist everyone should the queues become too long.
Some discussion followed about sunflower lanyards as a possible solution which would give staff an indication that somebody might have additional needs. Some carers were not aware of sunflower lanyards and what they meant. The panel had an in-depth discussion on the Sunflower lanyard, the Dementia Advisor explained that they could be worn without any further information or card attached to them. Everyone agreed that wearing the Sunflower lanyard was important.
- Do you enjoy Christmas shopping?
Most panel members did not enjoy Christmas, this was because of the effort and the cost involved.
Christmas now starts in September, which is far too early, the spirit of Christmas has been lost and it is all about the gift.
PWD: “Christmas shopping this year is spoiled because the food shelves are empty”.
PWD: “It’s difficult to know what to get family and friends especially what present to buy for young people”.
PWD: “When I was a child, we were happy with a chocolate orange, a small gift or maybe some clothes”
The panel then discussed the different costs for Christmas including the cost of Christmas cards. People suggested various retail venues where the cost was more reasonable. Most panel members agreed that too much money was spent on Christmas and discussed how the expectation has changed over the years. Panel members said they used to wait for Christmas to get things they needed.
- Does the change in temperature at this time of the year affect your shopping?
The panel discussed the contrast of going between warm shops and the cold outside, and often wanting to take lots of layers off, this wasn’t always convenient and there is nowhere to put your coats, so you land up carrying them which makes shopping more difficult.
A panel member commented that there was a time bigger retail outlets had coat/hat counters, so when entering the shop, you could hand your coat and hat in and were given a token with a number on for when you needed to collect them on the way out. All panel members agreed that a coat/hat counter would be a good idea to have in all shops, especially the bigger outlets.
It was noted by the panel that during busy Christmas periods more indoor seating needs to be made available. Some panel members had noticed that Christmas merchandise was in the place of seating.
- Have you been to the Christmas market?
PWD: “I don’t feel safe walking around the market due to my limited mobility. I find there are a lot of trip hazards, and I don’t want to fall”.
PWD: “I don’t mind the Christmas Market; I have family playing in the band, so I wrap up and go down to listen to the music”.
It was noted by the panel that falling whilst at the Christmas Market was a worry for everyone, especially when it’s busy or gets dark.
It was also acknowledged that sometimes what a carer / family member might think would be enjoyable or might want to do together with the person with dementia, may not be enjoyable /or maybe confusing. A panel member shared that a visit to the Christmas market was especially pretty at night-time with all the lights, however that dusk/ night-time may not be a good time for someone with dementia if affected by “sundowning”.
- Do you battle with making a gift choice with so much choice available?
PWD: “If I see something I know someone would like, I buy that without paying much attention to everything else in the shops”.
PWD: “My family give me ideas of gifts I can buy for them so I just buy what they would like or give them money”.
The panel discussed the importance of routine and familiarity especially when visiting retail venues. For example, being very familiar with all the shops that are in St Brelade’s, because you have lived in the area for many years. It was recognised by the panel that one of the issues with Christmas time was that there was sometimes a change of layout and generally the environment that this change generates, prove difficult for people with dementia.
Recommendation:
- Seating to be available in retail outlets, that is in the right place and easy to find.
- More awareness on Sunflower lanyard and a request to ensure that the awareness is carried to the Dementia Friends information sessions.
- More disabled toilets. Should a carer need to assist a person with personal care the single toilet isn’t appropriate to use.
- Availability of disabled parking, during busy times there should be someone checking that people who don’t have a disability aren’t parking in the disabled bays. Example: Waitrose and Co-op. More disabled parking spaces are needed in the town area.
- Care Homes to be guided with Christmas lighting to keep the environment dementia friendly.
- Coat and hat counters in the bigger retail outlets.
- Restaurants to offer earlier evening meal times in areas where there is not too much noise.