Dementia Support Line
Lived Experience Advisory Network Report for December 2025
About Dementia Jersey’s Lived Experience Advisory Network (LEAN)
LEAN is a network of 7 groups, including groups for people diagnosed with dementia and other groups for the family and friends of people with dementia.
The 7 separate groups each meet 4 times a year to discuss a subject of importance or concern. These subjects are either suggested by people attending LEAN groups, or by the staff, volunteers or trustees of Dementia Jersey.
Because of LEAN’s advisory purpose, the outcomes of the discussions and the recommendations of the groups are collated in one document (with all personal details removed) that is then shared, as appropriate, with government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.
All LEAN documents are also available on our website.
LEAN is facilitated by our Clinical Lead.
The content in all LEAN reports reflects the experiences of people attending LEAN meetings and does not necessarily represent the views of Dementia Jersey.
Please contact Dementia Jersey if you would like more information about our LEAN.
Email: info@dementia.je
Call: 723519
Overview of the LEAN meetings in December 2025
People attending LEAN meetings in December, including people with dementia and family carers, were asked to share their experiences of professional care at home and in care homes and to suggest recommendations for change.
A summary of the discussions can be found in the section below, followed by a further section with LEAN’s recommendations.
A total of 71 people contributed to these LEAN discussions in December.
The outcomes of the LEAN discussions in December 2025
- Firstly, we asked people attending the LEAN meetings to tell us if they or a family member have had, or currently have, care at home.
Most people with dementia who were in receipt of care at home initially did not consider the help they had as ‘care’ until some began to describe the help they had with shopping cooking and housework, which prompted others to say they also had such care. Most people with dementia did however say that they were mostly helped by their families.
Most family carers attending LEAN however, said that the person they cared for also had, or had previously had, professional care at home. Therefore, most of the experiences in the section below have been shared by family carers.
- We then asked people attending LEAN to share their experiences of the professional care they or a family member had at home.
The following are some of the subjects discussed and the experiences shared by LEAN.
Knowing about care options and the right time to access this
Most carers said that they did not have any guidance about what situations should prompt them considering professional care, that they had very little knowledge of the options for this, and did not know about the assessment process and of the associated costs. Most said they found this stressful.
Practical help and care at home
Most people with dementia who had professional care at home, and some carers, were pleased with the help they or a family member received. The following are some of their comments.
“She’s a real treasure my helper. She helps me make lunch and cleans 3 times a week.”
“Someone comes every other week and they help me mostly with cleaning and I don’t worry about the money for all this because it has been sorted already.”
“I can’t push a trolley around so shopping, which I like, would be difficult if I didn’t have help with this.”
“Oh yes, yes, I need to get to quite a lot of appointments, and I have someone who comes to take me, so this is good, yes.”
During these discussions, while some people felt that the carer should help the cared for person with whatever was important to them, some people then questioned the role of carers and the costs associated with care. They said that they did not think carers should cook and clean and look after people’s pets as they knew some carers did. Their suggestions for alternatives to this are in the recommendations section below.
Skills, training, competence and qualities of the carer
While some people attending LEAN spoke positively about the help they received from professional carers, many more shared examples of what they considered to be poor care, with some professional carers seeming to have limited experience and training in caring for people with dementia. Some shared experiences of care that they thought was not delivered in a caring way but was just “done to people” and often with no time allowed for chats or friendship.
When LEAN attendees were then asked to share from their experiences what they considered to be the most important qualities for professional carers, there was considerable agreement that the friendliness and kindness of the carer was of greatest importance. Some others also cautiously added that while these qualities were important, they said that they felt it was essential that carers spoke English well and did not have strong accents that made understanding them harder for people with dementia. Once this subject had been raised, there was considerable agreement about the importance of this. Others too spoke of the need for carers to be respectful but that this was not always their experience.
The following are some comments regarding the training, competence and qualities of carers with recommendations for change in the recommendation’s sections below.
“You can teach qualifications and have experience, but if they aren’t friendly, they’d be no good and you can’t teach that and some have not been at all friendly.”
“They need to help the person to be independent or at least do what they can, and not just do things for them and be so controlling. I’ve seen that. And if she’s told to do something she’ll not like it, so she just does the opposite.”
“It’s difficult when they are in your home, so they have to be nice and friendly, but often it’s awkward and they are not as respectful as they might be.”
“Some people don’t see anyone else for days so, the carer needs to know how important they are. Trouble is though, they have rotas and the like and they don’t have time for a cup of tea and a chat.”
“It’s time for a chat I really need most as I don’t see many people, but they don’t have time for that.”
“It’s a shame. The carer did not have anything in common with (name), did not share (name’s) interests and did not seem bothered to help (name) access these.”
“They are ‘OK’, but I sometimes get fed up with them, and sometimes they can be very pushy.”
“They need someone like themselves who they can communicate well with, you know, have a friendly chat.”
“My wife was actually able to get out of bed, but because she wouldn’t do so for the carer my GP eventually said she’d have to be admitted to a care home.”
“Friendliness, that’s what I was looking for. They come and do their job, but it was friendliness I was looking for.”
“There was this dangerous situation we had, and the carer did not know what to do!”
And some positive comments included,
“Although we did not have a care plan when he left hospital, the Social Worker suggested a care company which turned out to be successful. They kept him occupied on his iPad and this worked amazingly well so I think the carers we had were excellent.”
“The one I have is very young so she can’t have had much experience but she’s wonderful.”
Gender
Once this subject was raised by one person others joined in the conversations with many expressing strong opinions for their own preferences, both for themselves and for their relatives. Others said that because patients in hospital do not get a choice in the gender of their carer, this should not be an option for care at home.
“Carers and nurses tend to be women don’t they, but I would prefer a man, but I don’t think I could ask for this, could I?” (Male LEAN attendee)
“I definitely would not want a man to help me wash or go to the toilet.” (Female LEAN attendee)
“I’m glad we are talking about this. I wouldn’t like to be cared for by a man, but I didn’t think I could say that.”
Care plans and flexibility for changes
Although many people spoke of the need for robust care plans with essential punctuality and reliability, many people spoke about the difficulties they experienced when their situations changed, often because of illness, family or work pressures. Comments related to this included,
“Continuity of care is important to me, and this means with the carers too. When there have been last minute changes this has had a major impact on (name) and how she responds to the care being provided. There needs to be nothing unexpected and no last-minute changes.”
“When we’ve had a change of carer at the last minute, a new one, I’ve had to stay and teach them and show them how to do things. So, I’ve missed work and other appointments, and this has been extremely disruptive.”
Recommendations concerning care plans are in the recommendations section below.
Cost of care
A lively discussion took place with people attending LEAN sharing their many and varied experiences of care and the cost of this. Some people said that it was the worrying cost of care that prevented them from initiating professional help and others said that the projected costs were their reason for delaying what they knew was much needed care. This was also true for people considering a move from domiciliary to residential care. There are recommendations regarding care costs in the general recommendations section below.
“I couldn’t get a night carer because it cost more than £200 a night, so I haven’t had a good night’s sleep a long while.”
“I don’t understand how they work out who pays how much for care so I’m worried and I’m putting off thinking about it.”
Day care centres
While not the focus of our LEAN session this month, the subject of day care centres was raised with many people saying how helpful these centres were or had been in supplementing professional care at home. Others then continued the discussion saying how helpful this would be to them if such care was available, adding essential occupation, variety, and companionship for their relatives, and how cost effective this would be for them and for the government. Further notes about day care centres are in the recommendations section below.
“The Hollies is the most helpful care. It’s a lifesaver and it’s brilliant.”
“There’s transport. I don’t drive so it gets him out and about and doing things with others.”
- We then asked people attending LEAN to tell us if they or a friend or family member have been or are currently being cared for in a care home.
While many carers of people with dementia wanted to share their experiences of a relative’s care in a care home, only one LEAN attendee with dementia is currently living in a care home. Another occasionally stays in a care home for respite care, and one family carer has had experience of her own care in a care home following an accident. Most of the experiences shared in the following section are therefore from family carers.
- People attending LEAN were asked to share their experiences of care in care homes.
The experiences of people attending LEAN groups were varied and included the following subjects.
Choice of care homes
Most people attending LEAN said that there was no choice of a care home because at the time care was needed, there was no availability, so they had to then accept the first place that became available.
“I would have liked to be able to choose a home that would suit her better, but when it came to it, I had no choice.”
“Really before you need it, you should go to all the Dementia Jersey meetings, listen to what others say, and then make your choice based on what you hear, if you get a choice.”
The locations and settings of care homes
People attending LEAN spoke at length on this subject with many saying they found it difficult to get to a care home to visit their relative and often had to depend on other family or friends for lifts. One person said they had two separate bus journeys to get from their home to a care home on the other side of the island. They added,
“A chance to get to see him without having to use two buses would have been better.”
Others, while agreeing that location was important said that,
“Location is important but getting the right care home is the most important consideration.”
“When you think about the setting, or location, or the style of the building, perhaps it’s not so important for some people, particularly with advanced dementia, as they may not notice a sea view, another view, or the style of the building.”
Bringing personal items of importance when moving to a care home
Many people attending LEAN spoke of the sense of loss and dislocation they or their relatives felt when moving to a care home and of the importance of having personal items to help them feel more comfortable and more ‘at home’. Recommendations for this are below.
Care home staff
The conversations in LEAN groups concerning people’s experiences of the staff in care homes were mixed, with the following comments.
“The staff are great, friendly and nothing is too much trouble for them.”
“I found that they weren’t that good at talking to you, so I think that even if you have the most qualified of staff – but I didn’t know if they were qualified – if they are no good at talking to you it’s useless.”
“My mum’s experience was awful. I don’t like to say this, because I’m not racist, but a lot of staff couldn’t speak English properly, and others had such strong accents that even without having dementia it was difficult for me to understand them.”
“Some of them don’t seem bothered and just sit there and chat to other staff. I’ve seen this so often.”
“I know a lot more about dementia and caring for people with dementia than most of the staff there.”
“There never seem to be enough staff on duty trained in dementia.”
“From all my time with (name) in the care home, there appeared to be no gentleness, kindness, empathy or understanding in the staff.”
“On one occasion my mum was soaking wet in the bed. I told the nurse, but she didn’t come in so I dealt with her but then I actually got told off for doing it. There was no caring nature.”
“One day I heard a carer shouting at my husband to sit down in an attempt to get him to sit on the toilet. She then tried to push him down. The shouting and the shoving were not the right way to approach him. He wouldn’t know what ‘sit down’ meant and he would be frightened by the shoving.”
“My husband had a catheter and at night he needed a bigger bag, but his bag was never changed and often filled up and then backed up which was dangerous given his kidney condition.”
Following this comment there was a longer conversation about what care meant with attendees agreeing that people mostly got ‘care’ done, but that ‘caring’ was a description of the way the thing might be done which was often absent. They developed this by saying ‘care’ could be a tick box of things done to or for a patient or resident (shower, feed, change the bed) but this could be done in a caring way, or not. One person added,
“The most important things for me are that staff are highly trained and highly motivated but most of all, caring.
Care home fabric and procedures
The following are some more general comments concerning the fabric and procedures in care homes that people attending LEAN wanted to voice.
“I’ve heard that some care home staff have to pay for their own training and do it in their own time. Could this be right?”
“I know that some people are got up at 04.00 for their shower, which I think is just for the convenience of the systems and staffing rotas.”
“My husband has never had a shower or his teeth cleaned. I know this because the towel is never wet, the shower is never wet, the soap and shampoo haven’t been used, and his toothbrush is still in the packet.”
“They seem to treat everyone the same, in the way they speak to people, do care, and generally treat them, but it should be different for everyone because everyone is different. You hear them say it’s person-centred but it’s not. It’s a system.”
“It’s hard to say this, but there seem to be cultural differences in the way the staff seem to do their work, some of which doesn’t feel right for Jersey.”
“I’m concerned, and I think others might be too, because the psychiatrists seem to only listen to care home staff when they are finding it difficult to manage people. If they had asked me, I would say that my wife was finding things difficult because of the way she was spoken to and managed, and then she would not have needed medication to calm her.”
“My husband was admitted to hospital because he was so dehydrated. I kept on telling them that he couldn’t reach the drinks I could see on his table, and even if he could see and reach them, because of his dementia he would never think to actually have a drink if not prompted. This basic care was missing.”
“I am so concerned about the floors. The carpets are so stained and the building does smell. Is there some sort of recommended product for the floors in care homes?”
One carer told us of the following situation which then became a concern for everyone else attending this LEAN session. She said that she had heard another resident calling out for help 3 or 4 times and the only member of staff present just shouted back that she was too busy with all the notes she needed to write up and the resident would just have to wait. This person said that she was left wondering if the management even knew such situations happen, given the limited number of staff on duty.
Activities
During all the LEAN meetings there was considerable discussion about the activities in care homes, with people listing the following activities that they knew were regularly or occasionally provided; TV, bingo, flower arranging, puzzles, colouring, visiting music groups, and seated yoga. One person added that the care home in which they have occasional respite have a Happy Hour every week with a free drink. LEAN attendees said these activities seemed to be appreciated by most of the residents though recommendations for improvements were made, which are in the recommendations section below. One person summarised this by adding,
“What you just need is someone to help keep you on your toes.”
Some however said that there was never any evidence of activities being offered, or at best very few for their relatives. These are some of their comments.
“They did nothing with them, no activities.”
“There’s nothing to do or being offered to residents and I’ve often heard people being told to sit down, sometimes quite loudly and frequently, when all they want to do, maybe because they are so bored, is to just stand, walk, or move around.”
“On one occasion my husband was given a plastic examination glove to play with.”
“One day I saw a member of staff sitting on a box that contained various items for activities and chatting to another member of staff while the residents in the room were just sitting in a circle of chairs doing nothing.”
“We have to find a way to make things better.”
Of concern to many was what they believed was the over-use of the TV in day rooms, which they felt might stifle conversations, and would not be wanted or appropriate for some residents. Some also added that having the TV on should not be considered an activity. Some people described their experiences as follows.
“When I go there, the TV is always on, there’s no choice, it’s so loud, and on top of that no one seems to ever be watching it apart from the staff.”
“It’s so oppressive in that lounge, the TV is constantly blaring and no one but the staff seem to be really that interested in it and they can’t change the channel even if they wanted anyway.”
“(Name) always preferred to stay in his room because it was more peaceful there. I’d do anything I could to get him out of that lounge.”
Food and meals
All people attending LEAN said good nutritious food was important, especially for residents who were not able to choose food for themselves because of their dementia. LEAN wanted to express their concern for these residents and wanted reassurance that a dietician is consulted in such circumstances.
“I am concerned because sometimes when I go in to visit (name) I see some people eating very little and some not having the help to eat which I think they might need.”
The following further comments were made regarding food and mealtimes.
“The food is important and it’s great.”
LEAN’s recommendations concerning food and nutrition are in the recommendations section below.
Pets
When the subject of pets was raised most people said they had a pet at some time in their life and that having a pet was important to them. Some then said they or a family member missed having the company of a pet and caring for a pet when they moved to a care home. Some people said,
“It’s almost essential to have pets. We’ve lived with dogs all our lives.”
“I couldn’t do it. I couldn’t leave my dog, so I’d never go to a care home.”
Privacy and respect
Many people described experiences where they believed their relative’s privacy and dignity was not respected as it should be and commented,
“The staff are in and out all the time. This is one thing I don’t like.”
“They don’t knock and they just come in and I would like more sense of control.”
“I found this one of the worst things. It’s knock, knock and straight in.”
“They come in at night too and shine a torch. I know they are checking but I don’t like it.”
LEAN’s conversations then changed focus to discuss issues they felt highlighted a lack of dignity for residents when they were in the lounges. They agreed that having the chairs in these rooms is a circle around the room was undignified. They agreed this did not facilitate conversations or connections between residents or with staff and everyone could view any care being given to other residents by the staff. Recommendations for change are in the recommendations section below.
Care at Jersey General Hospital and St Saviour’s Hospital
Although LEAN’s focus this month was on residential care, some people were keen to include their experiences of care in the General Hospital and St. Saviour’s Hospital, as this related to residential care. These are their comments.
“I was pleased when (name) moved to St Saviour’s from his care home because I’d heard the care there was good, and it was.”
“It was a hospital and not so homely but the care there was superior.”
“It was a relief when (name) went to the hospital because of the better care they got there.”
- Finally, we asked if LEAN attendees had discussed their thoughts and feelings about any care they might need in the future and if so, we were interested to know if they had found these conversations helpful or challenging in any way. We were also interested to know what types of care and support they anticipated would be most helpful to them.
Experiences of conversations about future care
In response to this, some people said they had had such conversations, that these had been helpful and were glad to have had them. Most of these conversations were between partners, and not between adult children and their parents. Others said they had only had either very brief responses when the subject was introduced, or said they were too anxious about upsetting a person to raise the subject. The following are some of the experiences shared in LEAN sessions.
“Yes, we’ve discussed this quite a lot and I hope my daughter understands that I wouldn’t have a problem with this because I keep telling her not to do things for me.”
“We have spoken about it to the children, but they found it hard I think.”
“Some day I will probably end up in a care home but I don’t want to think about that for myself now so I wouldn’t talk about it.”
“I wouldn’t start a conversation about dementia and care. I can talk about it here but not with other people at home.”
“I don’t tell my family what’s going on or what I’m thinking because it’s too difficult.”
Because many people found it difficult to initiate these conversations and had not done so, and because others felt the conversations had not been helpful, LEAN did offer some suggestions for helpful ways forward which are in the recommendations section below.
Reflections on future care needs
It was interesting to note that most people attending LEAN, when reflecting on their own possible future care needs, said they would be relatively happy to accept help with household chores, lifts, and shopping if they were ever unable to do these things for themselves, but most said they would not want anyone to have to provide personal care for them. They felt this was in some ways undignified and would signal a loss of their personal pride and independence.
“Cleaning and cooking and lifts would be OK, but certainly not anything else more personal.”
During these conversations some people talked about the costs of care being a significant barrier. For this reason alone, some people said they would never consider employing a carer and therefore would never discuss it. There was some considerable agreement when one person said that “It’s just not value for money” and another added, “They take a lot for that. It’s not worth it” which was accompanied by much head-nodding.
Some people then continued the discussion, saying that in the future robots would be doing all their care and would replace the need for carers, and one person said they would rely on ‘Alexa’ to remind them of things they might forget.
LEAN’s recommendations
LEAN’s recommendations are in four sections, firstly, recommendations for all types of care, then a section with recommendations specific to care at home, followed by a section with recommendations for care homes, and then a final section with other general recommendations related to care.
General recommendations
- Future care needs
Because people attending LEAN felt it would have been helpful if the subject of possible future care needs had been raised by a health professional, they recommend that there should be a fuller discussion to establish people’s preferences both with the cared for person and with their family.
LEAN also recommend extending the use of the ‘This is Me’ booklet and that this should be studied by everyone involved in a person’s care.
- Training, personal qualities and experience of the staff
LEAN recommend that when new staff are being considered for employment the employers should prioritize the friendliness of the person and then consider their experience, training and qualifications.
LEAN recommend that all staff should have dementia specific, in-person training which should include types of dementia, the wide range of possible symptoms, individual differences, understanding the difficulties a person may have in communicating their needs and wishes, sundowning and what person-centred care is and how individual carers and organisations can be person-centred. With this they also recommend that all staff are mentored by a senior member of staff experienced in caring for people with dementia.
LEAN recommend that there should be evidence of a carer’s ability to listen well, and to understand and speak English well.
LEAN recommend that all care managers of domiciliary care agencies and care homes should not only have advanced management skills and experience but should have specialist dementia care training at the highest level and that they should also be a visible presence in their care settings so that all staff can benefit from observing excellence in dementia care.
A further recommendation voiced by some was that all staff involved in the treatment, care or support of people with dementia should watch the video of Gladys Wilson with Naomi Feil (Vimeo) to inform their practice.
- Gender of the carer
Because of the importance of this to many, LEAN recommend that before agreeing to a package of care at home or in a care home, people should be asked directly if they preferred to be cared for by a male or female carer.
- Use of medications
Because some people attending LEAN believe there to be a possible over-reliance or over-use of medications, in all care settings but particularly in care homes, they recommend that the use of medications to control behaviours is reviewed and compared with UK data.
LEAN also recommends that there should be clear evidence that alternatives to medication having been tried before medication is prescribed and that families are consulted to offer any helpful insights they may have for helpful changes.
- Advocacy and support for people without family support in Jersey
Because some family carers attending LEAN said they had to fight to get the right care at the right time for the family member with dementia, they voiced concerns for people without family support. They therefore recommend that everyone in Jersey with a diagnosis of dementia and without any family support should be offered a named support worker who would visit regularly, with whom they can build relationships and share their concerns.
Additional recommendations for care at home
- Reliability and punctuality
Because so many carers said they needed to schedule their lives, work and other essential activities around the times professional carers were present to look after their relative with dementia, reliability and punctuality were described as essential.
- Fewer changes of carer
Because so many people felt that some of the most significant problems could be mitigated if people with dementia could be cared for by the same carer each day and over time, they strongly recommend that care agencies prioritize this.
LEAN also recommends that if it is necessary to introduce a new carer, the original carer attends with a new carer during a transition period.
- Care Plans
Because families usually provide some of the care for their relatives with dementia, with the inevitable occasional changes to their circumstances due to illness, their families or work situations, LEAN recommend that while a robust contract for care is essential, there also needs to be some flexibility for necessary temporary changes.
Additional recommendations for care homes
- Greater choice of homes
Because many LEAN attendees said they were disappointed not to have a choice of care homes at the time care was needed, they recommend that options should always be available, particularly as the feel of a care home is important.
- Location of care homes
Because so many care home residents are elderly, often with elderly relatives and friends who do not drive, LEAN recommend that all new care homes should be on good bus routes, and bus routes should be extended for existing homes.
A further recommendation was that care homes should have similar catchment area policies as for schools so that the care home nearest to a person’s home or family should be the first option for a person’s care (if care needs could be met there).
- Personal belongings
LEAN recommend that every care home should encourage and make space for people to bring some small items of importance and comfort to them when they move to a care home.
- Staffing and ratios
Because so many people attending LEAN described situations which they believe were due to there not being enough staff on duty, LEAN recommend reviews of all staff to resident ratios. They recommend that such a review should focus on the varied and complex needs of people with dementia.
- Pets
While appreciating that there may be complications and some restrictions with having pets in care homes, LEAN recommends that if a resident has an attachment to a pet, that arrangements should be made to facilitate the pet visiting the resident.
Some also recommend that residents should be able to keep small pets in their rooms, and others recommend that all care homes should have communal pets for residents’ comfort and occupation and be able to assist in their care.
- Privacy
LEAN recommend that there is greater respect for residents’ privacy and that staff only enter residents’ rooms when necessary and should knock and wait to be welcomed in before entering a room, apart from in emergency situations.
- Flexible respite options
Because carers attending LEAN spoke of the essential need for flexible respite options, including rolling respite, they recommend the provision for this is reviewed and made more widely available.
- Care home design/amenities
LEAN recommend that all rooms should have large windows as access to fresh air and nice views are valued.
LEAN recommend that all residents should have direct access to a garden from a lounge.
LEAN also recommend that research should be done to establish any possible effect of the use of plastic/vinyl chairs and bedsheets. This is because some people have reported severe sweating and sores which they feel may be due to the person with dementia sitting for extended periods of time on such chairs and on plastic mattress protectors.
Other recommendations are for care homes to have a hairdressing salon to enable residents to take care of their personal appearance for the dignity this provides, and because many people are keen to keep active and maintain their mobility, LEAN recommend that all care homes should provide a gym and swimming pool.
- Increased range of activities and outings
Of greatest concern to most LEAN attendees was the apparent over-use of the TV in care home lounges. LEAN therefore recommends there should be at least one TV free lounge.
LEAN also recommend that residents and their relatives are asked about what group and personal activities they enjoy and for these to then be facilitated.
LEAN also recommends alternative seating arrangements in the lounges to encourage more meaningful conversations and interactions between residents and staff.
Finally during Christmas and Halloween LEAN recommends restricting the use of flashing lights and that consideration given to the use of images that could be frightening for people with dementia.
- Food and nutrition
LEAN recommend that all residents, when moving to a care home, and then at regular intervals, should have an assessment by a dietician to ensure that everyone has access to appropriate nutrition. They also recommend that care plans resulting from these assessments should include the use of appropriate crockery and cutlery to enable people to eat unaided, and if help is needed, that this is also included in person’s care plan and actioned.
- Communication with residents and families
Because many people attending LEAN said that they did not feel heard or listened to by care home staff, they recommend regular forums to be set up and promoted to all residents and their families where concerns can be publicly addressed and actioned. They recommend these should be regular in-person meetings with the options of online attendance for people who have family, work or other commitments at the time of the meetings.
General recommendations for other organisations concerning care
- Conversations about possible future care needs Because many people found it difficult to initiate conversations with their relatives about the possible need for care in the future, or that once initiated these conversations proved difficult, LEAN recommend that both at the time of diagnosis, and again at subsequent medical assessments, that a doctor should initiate such conversations and make people with dementia and their families aware of the various care options.
- Care costs
Because many people attending LEAN are unhappy to be paying very large sums to private companies for their relative’s care, which many feel to be substandard, they recommend that care agencies and care home accounts are scrutinized and that the outcomes of these are made public.
While LEAN said that people with dementia should have help with the activities of daily living when difficulties were a consequence of their dementia, they recommend that carers should not be employed for such work but this should be undertaken by trained home helps thus reducing costs for individuals and the island’s health service.
- Staff training LEAN recommend a review of the training standards for all staff caring for people with dementia with mandatory dementia specific training requirements of different roles.
LEAN recommend that no care agency or care home should require their existing staff to fund this training themselves or require staff to do this in their own time.
They further recommend that no new staff should not be employed until they have the required training for the role.
- Day care centres
To reduce domiciliary and care home costs for individuals and the island’s health service, LEAN recommend that day care centre provision is extended to be available to more people, people with more complex needs, for longer days and weekend cover. LEAN also recommend this because they believe such specialist care would provide more opportunities for varied occupation and socialisation.
Dementia Jersey – December 2025