LEAP, January 2023

Lived Experience Advisory Panel Report for January 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 January 2023

In January the LEAP Panel members were asked to share their experience with Food including the ability to eat and drink, shopping, cooking, choking, dietician, dehydration, crockery and utensils.

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 15 pwd (person with dementia) and 11 carers attended the three separate LEAP meetings in January, 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 January 2023

1. Has your appetite or taste changed since you received your diagnosis?

PWD: “Yes and No – I had no appetite at all when I was diagnosed.  I had to work on building    my appetite up again and it is now back to normal”.

PWD: “My appetite hasn’t changed at all”.

PWD: “I eat more healthy food now and avoid alcohol”.

PWD: “Not my appetite but I have stopped drinking alcohol”.

PWD: “I eat more fruit and vegetables now”.

Carer:” I noted that covid had an effect on appetite”.

Carer: “My partner always had a good appetite, was diagnosed with dementia and then covid. The decline has been significant and takes 2.5 hours to assist with meals. We have had a referral to the SALT team (speech, language or swallowing team)”. 

During the Panel discussion it was noted that most people with a dementia diagnosis had stopped or reduced the amount of alcohol they consumed.

No one on the Panel had noted any change in their taste or smell.

A Panel member requested additional information on the SALT team. The Dementia Advisor gave a brief explanation on the role of the SALT team and directed the Panel member to the Gov.je website should they need further information.

2. Do you prepare meals for yourself, or do you have a carer making your meals?

PWD: “I have always prepared my own meals and still do so, I use the microwave and cooker with confidence”.

PWD: “I buy ready meals from M&S (Marks & Spencer’s) and heat them in the microwave. I read and follow the heating instructions on the packaging”.

PWD: “My partner has always cooked the meals; I do help with the peeling of the vegetables and the setting of the table”.

PWD: “I use the microwave for heating meals and have bought an air fryer. My partner does the cooking on the cooker”.

PWD: “I make the lunch which is usually a sandwich, and my partner cooks the dinner”.

Carer: “My partner who has a dementia diagnosis used to help me with meals but now prefers to not get involved and I don’t push”.

Carer: “Meals on Wheels deliver healthy and hearty meals for lunch, so my partner and I just have something light for dinner, like soup or crackers and cheese”.

During the Panel discussion everyone agreed that a little help with making meals or setting the table made them feel helpful.

Ready meals were discussed, and all Panel members felt that they were healthy and priced to be affordable.

3. Does anyone use the specialised cutlery and crockery when eating meals, if yes, does it make eating meals easier?

PWD: “I was given some cutlery from the occupational therapists which I used for a few meals, but I have gone back to normal cutlery and changed the way I cut my food.  This works well for me”.

PWD: “No, I wasn’t aware that you could get specialised utensils and cutlery”.

Carer: “My partner is in a care home, and I have asked about the special adaptive cutlery. They still haven’t gotten any; I will have to remind them again”.

During the Panel discussion carers were very interested to learn about which colour and type of plate is best for people with dementia and all the different types of equipment available.  Some Panel members felt that the cups with specialised lids were very ‘baby’ like and didn’t like to use them.

4. Would eating finger food be easier for you?

PWD: “Yes, when I had a stroke about a year ago, I found eating finger food a much easier way to eat and I could feed myself without putting anyone out”.

PWD: “Eating food with your fingers isn’t healthy, I use a knife and fork”.

Carer: “My partner is in a care home, and they often have sandwiches, fruit and finger food.  I find that they cope better using their fingers and don’t take as long to eat”.

The Panel discussed eating with their fingers or finger food, it was noted that most Panel members felt that this wasn’t something that should be encouraged. Some of the Panel felt that they would rather feed the person with dementia to save time and mess. Others shared that they don’t go out for a meal anymore as it is embarrassing when the person with dementia drops food down their front or doesn’t close their mouth.

The Dementia Advisor discussed with the Panel the importance feeding yourself for as long as possible.  Feeding someone who is still capable of doing so themselves will ‘deskill’ them and the person with dementia will do less and less on their own.

5. Are you under the advice of a dietician?

PWD: “No, I didn’t need advice I have always eaten healthy food”.

PWD: “A dietician helped me to work out a diet plan so I could eat more healthy food and lose some weight”.

PWD: “No, my partner makes sure I eat what I should, so I don’t ever need a dietician”.

Carer: “The Doctor sent a referral to the dietician team, and it took 9 months before I heard back from them, by that time my family had helped me work out a healthy eating plan”.

The Panel discussed having a separate meeting after diagnosis regarding healthy eating and drinking. Most Panel members felt that getting information on healthy eating and drinking at the same time as diagnosis was information overload.  There was also a discussion around the long waiting time for appointments.

6. How much water do you drink daily?

PWD: “I never drank any water before my diagnosis, now I use a flask and bottle which I fill up during the day as needed”.

PWD: “I don’t like water, I never have.  The maximum I drink during the day is two glasses.

Does tea and coffee count?”

PWD: “I drink a lot of water throughout the day”.

PWD: “My partner makes sure I drink enough water all day”.

Carer: “I find that my partner with dementia drinks more water when we are at home because the toilet is close by.  When we go out for a whole day and it is hot, hardly any water is consumed, and this affects the mood the next day or even up to two days afterwards.

The Panel discussed not eating and drinking enough and how it can lead to issues like dehydration, constipation, urinary tract infections, and weight loss, which could make dementia symptoms worse. A panel member had given their partner jelly drops to help reduce dehydration during a period of illness.

7. Do you monitor your weight and how often?

PWD: “Yes – my weight is always the same”.

PWD: “I keep a check, but my weight is always very stable”.

PWD: “Yes – I jump on my scale occasionally and it is always the same”.

PWD: “I do yes – I do very little about the weight I have put on. I used to play golf and now I don’t do much exercise. I suppose I need to still do some walking that way my weight will improve”.

PWD: “I weigh myself once a week, so far my weight hasn’t changed”.

PWD: “I have put on a couple of pounds, due to reduced exercise”.

A Panel member shared that they enjoy a walk every day because it helps to clear the mind and get fresh air in the lungs.  Some Panel members shared that they are afraid to walk in case they fall.  Others admitted walking daily before covid and just hadn’t started again. One Panel member shared that he enjoys the ‘Walk and Talk’ activity offered by Dementia Jersey.

8. How often do you clean out your fridge and check expiry dates on food?

PWD: “I have always lived alone and check the expiry dates every day and if the fridge needs cleaning, I will do it straight away”.

PWD: “My partner is in charge of the fridge and freezer and checks the expiry dates”.

PWD: “I keep my fridge very clean and check expiry dates every day”.

PWD: “I don’t have much in my fridge, so I don’t worry about checking the expiry dates”.

The Panel discussed the new rule in supermarkets where expiry dates on some foods were not going to be checked.  Some felt that this may cause people to get sick, others commented that during the war you ate everything regardless of the expiry date and no one complained or got sick. Some Panel members shared that a fridge was a luxury in their day, and most items were kept in a cellar. 

9. How much fruit and vegetables do you eat every day?

PWD: “Every day I eat fruit and vegetables, I love all fruits”.

PWD: “I am a vegetarian; I eat all vegetables and fruits through-out the day”.

PWD: “I eat an apple a day because it keeps the Doctor away”.

Carer: “I have always made sure that we eat fruit and vegetables every day”.

Carer: “We ate fruit and vegetables from a young age so not difficult to follow”.

10. How do you cope when eating at a restaurant, pub or café?

PWD: “I need assistance with cutting up my food and prefer to go to places that are not too noisy”.

PWD: “I read the menu but always have the same meal, because I like it and not because of any other reason”.

PWD: “I like going out for meals, sometimes when I read the menu, I get confused with the choices, so my family help me to make the best choice”.

PWD: “We try and go out for lunch at least twice a week.  We don’t like going out for dinner because it gets dark, and I prefer to be at home when it is dark”.

PWD: “I would prefer a smaller menu to read, I get very confused when there is a big menu and I then need help”.

PWD: “Lately we have noticed how expensive it is to eat out, so we have stopped going. Not good really as we used to enjoy people watching and meeting friends”.

PWD: “I like to go out with my family, I find I eat better when I am with other people. Eating alone isn’t much fun”.

11. How knowledgeable are you about food that is good for brain health?

PWD: “I don’t really know a lot about brain health and eating.  I eat what I enjoy and think I am healthy enough”.

PWD: “Yes I am knowledgeable, but I don’t always eat healthy food”.

PWD: “I think I eat healthy but not sure if the food is healthy for my brain”.

PWD: “Doctor J told me to not eat bacon, fish or chips so I have not had any since then”.

Carer: “The Memory Assessment Service (MAS) gave us a lot of reading material on brain health but to be honest that was the last thing we were thinking about”.

The Panel discussed how people can keep their brains healthy throughout life and ultimately, help reduce their risk of dementia. It was noted by the Panel that some children today are not used to eating vegetables and fruit daily. More education is needed in schools and at home so that children understand the benefits of following a healthy diet including vegetables and fruit. 

12. Did you receive information regarding maintaining good nutrition and keeping hydrated at the time of diagnosis?

PWD: “I didn’t receive any information on nutrition. They gave me my diagnosis and information to read and said I didn’t need to return”.

PWD: “No, I didn’t receive anything, just a booklet about my diagnosis”.

PWD: “I can’t remember, there was a lot of information I had to read”.

Carer: “We received information when attending the second appointment at MAS”.

13. What circumstances influence what and when you eat, for example do you eat as much if you are living alone?

PWD: “I live alone and have always eaten very well and cook for myself. I make sure I always have food in my fridge”.

PWD: “When my partner is with me, I eat well.  Now in hospital so I usually just make a sandwich”.

PWD: “I enjoy eating with people more than alone”.

Carer: “My partner moved to a care home and lost 10kgs. I now go into the home and feed him; this has helped his weight.  We have also started fortisip drinks which are given between meals.  We are waiting for a dietician referral appointment”. 

Recommendation:

• MAS to set-up a separate appointment after receiving a dementia diagnosis to share important information on healthy eating and drinking.
• Restaurants, pubs and coffee shops to have easy read menus.
• More awareness on brain health at schools.