Lived Experience Advisory Panel (LEAP) Report for June 2022

Dementia Jersey’s Lived Experience Advisory Panel

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 a formal agenda, 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 of discussion are broad and are submitted either by Panel members or 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.


Call: 723519

Overview of the LEAP meetings held in June 2022

In June, the LEAP members were asked to share their experiences of care homes, including; guidance and support available to them when considering a move into residential care, visiting someone else in care, supporting a relative living in a care home or being resident in one themselves, either permanently or for a limited period of respite. They were also asked to make any recommendations for changes they believed would enhance the systems involved in moving to a care home or for residents’ experiences in care.

A summary of these discussions can be found in the ‘Outcomes’ section below, followed by a section with the Panel’s recommendations. A total of 26 people attended the LEAP meetings in June, including 11 people with a diagnosis of dementia and 15 supporters or carers of people with dementia.

All information provided below is anonymised and non-specific gender pronouns have been used.

Outcomes of the LEAP meetings held in June 2022

  1. Support and guidance concerning a person’s move to residential care: All Panel members who had experience of a relative moving into care, said that at the time, they felt they had no one to help them understand the timing, processes, decisions and the decision makers involved with such a move. One member said, “At the time I was just so in the dark about all this and I felt guilty even thinking about it. I had promised my partner I would always look after them. We vowed this when we married and I felt like I was about to break my vow to them”.
  2. Nursing care in care homes: Some Panel members were keen to comment about what they experienced as excellence in the quality of the nursing care their relatives had received while in care homes, particularly in crisis situations. Others had less positive experiences but added that these were not related to care in crisis. They hoped that in any crisis the best care would be immediately actioned.
  3. Empathic care and engagement: Panel members were divided in their observation of care staffs’ empathic engagement with residents. One Panel member said, “I was moved to tears seeing a member of the care staff shedding a tear for my partner. It was lovely”. Most however did not share this observation, agreeing that although staff delivered care to an acceptable standard, they could not describe this as warm or relaxed. Most commented that engagement often seemed minimal and for a specific function and was often rushed, with one saying, “You could not really describe this as meaningful friendly engagement”. Another described times when they had seen staff sitting in groups in communal areas, not engaging with residents and apparently occupied with some activity on their own phones. The general feeling of the Panel is that there is not enough 1 to 1 engagement and in some cases members observed that staff previously engaged as Activity Co-ordinators were more recently working as carers when the homes appeared short staffed.
  4. Reasons for a move to residential care: Panel members’ experiences broadly fell into three categories at the time of the move. For some the move was in response to a sudden, significant worsening of symptoms directly related to a person’s dementia, and for others with dementia, the move was because of a significant deterioration in a person’s physical health condition needing hospital care, with the move to residential care following the hospital admission. The third group were people whose move to residential care was considered over a longer period as symptoms progressed but was not in response to any particular crisis. From the Panel’s discussions it was clear that most members agreed that although it was initially extremely difficult, a move into residential care was probably easier to process and accept when this was taken out of their hands and been absolutely necessary at the time, being decided and managed entirely by health professionals. One member said, “This was the worst experience of my life, but I did know it was for the best and I was actually quite glad that it just had to happen.” Some described the years that they had wrestled with the thought of such a move as their relative’s symptoms progressed and of being weighed down by the weight of responsibility they felt they bore alone to determine the right time for such a move.
  5. Choosing a care home: While Panel members agreed that a named care co-ordinator/service navigator would be beneficial, they said they would find it helpful to have more information in the form of a booklet, about the processes involved with such a move, including sections informing people about what services and amenities they should expect, the costs involved, and guidance on how to choose the right care home to meet a person’s specific needs and preferences. More detail is available below in the ‘Recommendations’ section.
  6. Availability and choice: Most Panel members said that they did not have any choice of residential care home for their relative and that they had to accept, or felt they had to accept, the only rooms available at the time this was needed. They said they found this hard because they did not know the procedures that were being put in place and were worried that if they declined a room for any reason they might lose this and the person may have to say in hospital indefinitely, or at home with insufficient or inappropriate care at home.
  7. Rolling respite: While some Panel members were not aware of this option (available in some care homes) those who had accessed this had found it to be immensely beneficial both for themselves as family carers and for the person with dementia. One commented that this “Softened the blow” of the move by just committing to a few weeks of care but with the possibility of extending this if it seemed the person with dementia settled well and they were comfortable with the arrangement.
  8. Visiting restrictions (not covid related): All Panel members who had been restricted from visiting their relatives during the first few weeks in residential care said that while they appreciated the rule in theory, they did not feel this was beneficial at all to their relatives, who they said often seemed distraught by the separation. Some also described in detail the profound sense of guilt they felt by “Deserting” the person, knowing that they would feel bereft and would not understand why they had been left without the person they loved.
  9. On-going involvement in decisions when in care: Some Panel members said that although they were told that they would continue to be part of the person’s care and be involved in decision making, they felt this was not the case. One said that “Once you sign those papers, it’s the care home who’s the prime carer and not you. They say you’ll be part of a team, and part of ‘the family’ but you’re not and you just have to fight for your role”. Another said, “No one prepares you for this. You are ‘signed off’ and it’s just over to the care home”.
  10. Finding a voice: Some Panel members said that while they felt they were strong enough to, “Stand my ground, question authority and ask questions until I had my answers”, they appreciated that not all could do this, with some even fearing repercussions for their relatives by “Rocking the boat”. The Panel expressed further recommendations as below.
  11. Recruitment: The Panel discussed the apparent crisis in recruitment of care staff with those who had been aware of the government’s recent recruitment campaign being quite shocked by the tone set and with its message encouraging people to see this as an extra job to earn a bit more money in their spare hours, rather than as a significant career in an essential service. The Panel also discussed remuneration and were of the opinion that rates of pay in the care sector were far too low for this valuable and necessary work.
  12. Covid: Most Panel members believe that while the government had the best intentions for the welfare of people in Jersey during the pandemic, they are of the opinion that significant mistakes were made and continue to impact residents in care homes today. This was particularly in relation to people not being able to see their relatives for many months, with the associated distress this caused, particularly for people with dementia. The Panel were also in agreement that the continued use of masks was detrimental to people’s welfare, particularly for those with dementia who need to access all means of communication, including facial gestures, to help them make sense of their worlds.
  13. Facilities in care homes: The Panel discussed the provision of facilities in care homes, with the recommendations of the Panel shown below.

Panel members’ recommendations for improvements related to care homes

  1. Provision of a named care co-ordinator or services navigator: Because all Panel members said they did not have the support they needed when considering their relative’s move into residential care and did not know which professionals they could discuss this with, they recommend that all people with dementia should have a named health professional appointed as a Care Co-ordinator/Service Navigator, appointed at the time of diagnosis who would help them navigate changes and transitions necessary as dementia progressed, including a move into residential care.
  2. Training and experience for all care home staff: Panel members recommend that all staff involved in residents’ care should have dementia specific training and have either experience in working with people with dementia or be mentored by a skilled professional until they are equipped with the specific necessary skills for such specific care work. The Panel further recommended that all staff should have an excellent command of English, and that each care home should be required to display; the patient to staff ratios, descriptions of staff roles and the uniforms for each role, and the training, experience and qualifications of all staff members.
  3. Involvement of volunteers in activities: While all Panel members agreed that it should be the responsibility of care homes to provide appropriate activities for their residents, given the apparent shortage of such, they recommend that volunteers should welcomed and be trained and equipped to offer more opportunities for activities and engagement.
  4. Information booklet ‘Moving to Residential Care in Jersey’: All members said that they would find such a booklet, specific to Jersey, helpful.
  5. Choice: While Panel members appreciated that demand appeared to outstrip supply, they recommend people should be offered some choice so that the most appropriate placement could be made that would match the person with dementia’s needs and style, thus making the move and the settling into a home more likely to be successful for the person and for their family. The Panel also recommend the government address the apparent shortage of care home ‘beds’ in Jersey.
  6. Government owned and managed care homes: Most Panel members agreed that care home ‘beds’ should be provided by the States and not by private businesses which they understood as having, of necessity, profit before excellence in care as their primary function.
  7. Rolling respite: All Panel members agreed that this should be an option in all care homes, to benefit people with dementia and their families at such a difficult time of transition.
  8. Lifting visiting restrictions: The Panel recommend that there should be no imposed visiting restrictions when a person first moves into residential care but rather all assistance should be given to help family members spend as much time as possible with their relatives, supporting them as they adapt to life in their new home. One Panel member said they thought the restrictions on visiting were, “Barbaric and out of the dark ages and need lifting immediately”.
  9. Channels of communication between the resident, the relatives and the professionals involved in care: Nearly all Panel members said that the channels of communication between residents, relatives, care home staff and others involved in a person’s care were poor and needed addressing with new procedures being put in place. One Panel member said, “We need respect for our relationships with the person with dementia. We may have been married to them for decades or been their child for all our lives. It’s too much to lose.”
  10. Relatives’ forums: The Panel recommend that each care home should be required to provide regular meetings of a relatives’ forum, independent of the home’s management, at which any concerns could be raised and then communicated anonymously to the management of the home, or if necessary, the Care Commission.
  11. Recruitment: The Panel recommend that the government reconsider the tone and content of any further recruitment campaigns for the care industry and address the poor levels of pay for this essential workforce.
  12. Covid restrictions: The Panel recommend an urgent review of all continuing covid restrictions including the requirement to wear face masks and apply the very best and latest research available in any future outbreaks where new restrictions are considered.
  13. Facilities in care homes: All Panel members agreed that all residents in care homes should have; their own bedrooms which they should be able to furnish and decorate as they wish, have their own bathroom facilities, that they should have open access to a garden, comfortable communal spaces to facilitate social interactions, have the opportunity to opt into or out of a range of appropriate activities, that family and friends should be able to visit with minimal restrictions on time and duration, to be able to join residents at meal times, and that opportunities should be available for couples to live together in care homes and share rooms and beds.

Dementia Advisor Team – June 2022