Dementia Support Line
Lived Experience Advisory Panel Report for October 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 October 2022
In October the LEAP members were asked to share their experience of Lasting Power of Attorney (LPA).
A summary of these discussions can be found in the sections below, including Panel members’ experiences and recommendations for change.
A total of 24 people, including 20 people with dementia (pwd) and 4 carers, attended the four separate LEAP meetings in October, 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 October 2022
- Understanding of a Lasting Power of Attorney: Majority of the panel members understood what a LPA was, some likened it to wills. Few knew that there were two types. A brief explanation by the Dementia Jersey Advisor was given on LPA and the two types. (Financial and health and welfare.)
Property and financial affairs dealing with money, finances and property. For example:
- Managing a bank account
- Paying bills
- Ensuring that you receive pensions and benefits that are due to you
- (If you allow it) to make decisions in respect of your home.
Health and Welfare dealing with your health and care. For example:
- Your daily routine and medical care
- Where you should live
- (If you allow it) life-sustaining treatment.
PWD: “when is the best time to do the LPA and could I make a choice between financial and health and welfare or do both go together?”
A discussion was held around the best time to do the LPA and the panel decided that sooner was better than later.
PWD: “it is more difficult when discussing LPA for health especially around difficult topics, for example, do not resuscitate orders, palliative care and end of life discussions with friends and family”.
The panel recognised that these could be difficult discussions however they were important and would make it easier for people to know their wishes and views.
During the panel discussion a PWD asked “who decides if I have capacity”.
The panel discussed how a person is assessed by a medical professional on their capacity and on the importance of sharing one’s wishes before capacity was under question.
- When did you first hear about an LPA?
PWD “my daughter suggested it was a good idea. I have two daughters, and both are executors of my Will, and it was felt that a LPA drawn up by a lawyer could fill the gap. We opted for a lawyer it wasn’t expensive, and it was quite an easy process”
PWD: “lawyers came to speak to us at work about LPA and most felt the meeting had only made them feel more confused between a Will and LPA. We didn’t hear from the lawyers again and never pursued it any further.”
PWD: “after my husband died, I wanted to put my son as my power of attorney, I went through professional advisers, my son paid so I don’t know how much it cost.”
- Does anyone have an LPA in place?
Five PWD have a LPA in place, and some panel members weren’t sure if they have one in place.
PWD: “my wife has my power of attorney and if she dies, she has three nieces who can take over. It was arranged through a local lawyer; I don’t know how much it cost.”
- What are the thoughts around getting the LPA in place?
PWD: “it was my husband’s funeral last week, so we have been discussing different options of what is best for me and my family.”
Carer: “Is the Jersey LPA different to the UK LPA.”
Dementia Jersey Advisor discussed with the panel that whilst the UK LPA might look like the Jersey one, a new Jersey LPA would need to be taken out if someone took up permanent residence in Jersey.
- What was the process like?
Carer: “I used a lawyer for my husband’s LPA, she left the Island, I really trusted her. The lawyer who took her place was good, but I did not find it easy to talk to him. The process went through very quickly.”
PWD: “I struggled with using the online system so went to the citizens advice bureau. They were not very helpful, and I was told to go and look it up online. I haven’t bothered with it since then.”
- Who did you use?
PWD: “I went to a lawyer whom I knew very well and did a Will at the same time. It was helpful to go through the process with somebody who was not family or a friend and could give me impartial advice.”
A panel discussed how it can be difficult if different family members have a difference of opinion and influence a person’s rights when doing a LPA or Will for that matter. It was acknowledged that in some family’s people may be concerned about protecting what they think is their inheritance making the whole process very stressful.
- Would you choose a Financial and Medical LPA?
Carer and PWD: “finance LPA were easy and was done online. The Health and Welfare LPA was done with help from a social worker. We did do reading up online and it was upsetting to think about these things. Once we got it done and dusted, I’ve been able to put it away knowing if anything happened to one of us, it would make it easier for them.”
During a panel discussion, one person mentioned that there were a lot of advertising from lawyers and that they can be very expensive. The Panel thought it would be a good idea for each Parish or some other trusted organisation to promote a Law firm that doesn’t have a vested financial interest. Health and Welfare needed someone experienced like a social worker to guide you through the questions and the impact of decisions.
- Does anybody have an LPA for health decisions?
Only one panel member has an LPA for health decisions.
During the panel discussions everyone agreed that the health and welfare LPA was more difficult than the financial.
PWD: “I have done it to take all the responsibility and decisions from my family. For instance, my choice of whether I want to be cremated or buried or if I am sick do I want to be resuscitated. It makes it easier for the people left behind. The family may not know what I want, and I want to be sure that they do.”
The panel discussed making advance choices around care homes.
Carer: ‘if you do express your wishes for a care home, with the shortage of beds it would be unlikely that they could follow you wishes anyway.”
- Does everyone have someone they could appoint as Power of Attorney and if not, do you know what assistance is available?
All panel members had someone they can appoint as power of attorney.
The panel discussed safeguarding issues for people who don’t have a family member they can appoint. There are some lawyers who would do it for a low fee but could be dishonest and expensive.
It was felt that a family member is the best option for a power of attorney. A volunteer had made an advanced care order as she wanted to spare her children from having to make any difficult decisions around her care.
- How can more people be encouraged to appoint a power of attorney?
PWD comments:
“Education, making people realise that you need this sooner rather than later and that there can be complications – help people understand how complicated it gets afterwards.”
“Some people might be put off just simply because of the form filling especially if you have dementia.”
“Safeguarding, of doing the form online, people with dementia could be at risk of being manipulated or tricked into appointing someone. Online system doesn’t protect you.”
- Were you aware you could set-up an LPA online for £25?
Some panel members were aware of the online £25 option; however, the consensus was that people wanted a person to talk to rather than do it online. They were worried that if they made a mistake they might be misrepresented, that is why some have gone down the lawyer route.
PWD commented that using an online process rather than a person such as a lawyer “it’s a bit like putting your faith in a second-hand car salesperson.”
Carer: “I tried online but it was difficult, I didn’t understand what they were getting at, in the end I went to a lawyer. We are halfway through, it has cosy me £700 so far.”
Panel members were quite shocked by this figure when compared to £25.
Carer: “online LPA is the cheaper option and if you are on income support even cheaper, however the signature section online is a problem.”
- Would support from a group to help you complete the forms be helpful?
All panel members agreed that support would be very helpful.
- For those who haven’t got an LPA. Can I ask why not?
Carer: “we started the application online but got stuck part way through the form as the two attorneys we wished to appoint weren’t on the Island and we didn’t quite know what to do to get their signatures, so we abandoned the process.”
Three panel members who don’t have a LPA didn’t have any comments they wished to share.
Panel members’ recommendations for The Jersey Dementia Strategy.
- Each parish to have a roadshow on LPA and PA.
- Lawyers to have dementia awareness training.
- Lawyer’s charges should be set, like it is online.
- Assistance from a person trained in dementia awareness with online form completion.
Dementia Advisor Team – October 2022