APPENDIX 9: REPORT OF A SPECIAL MEETING
OF THE FORGET-ME-NOTS
This special meeting was held to discuss the impact
that the Mental Capacity Act has had on members of the group.
The meeting was held at the request of the Dementia
Engagement and Empowerment Project (DEEP). DEEP had been approached
by the House of Lords Select Committee on the Mental Capacity
Act 2005 to find out the experiences of people with dementia.
This report will be submitted as written evidence
to the House of Lords Select Committee.
About The Forget-Me-Nots
The Forget-Me-Nots are a group of people with dementia
from the area of East Kent, who meet regularly in Canterbury.
The group aims to help people with dementia get their voices heard.
It is supported by the local NHS Trust, and co-chaired by Reinhard
Guss, Consultant Clinical Psychologist, Elisabeth Field, Clinical
Psychologist, Mental Health Services for Older People and Keith
Oliver who has dementia and is Kent and Medway Primary Trust Dementia
Service User Envoy.
The group aims to help organisations, including the
local NHS Trust to improve the quality of service they offer to
people with dementia. The group believes it is vital that the
opinions of people living with a diagnosis are heard by those
who make decisions. The group also functions as a network, where
people can meet others with a similar diagnosis and get to know
them better.
The Forget-Me-Nots is a key group within the Dementia
Engagement and Empowerment Project (DEEP). DEEP provides support
to existing and new 'involvement' or 'influencing' groups of people
with dementia across the UK. The project is being developed in
collaboration with people with dementia, and includes opportunities
for sharing resources and ideas, building the capacity of groups,
setting up networking opportunities between groups, supporting
existing groups to mentor emerging groups and, in time, for groups
to form a national network of collective voices.
About the meeting
Nine members of the Forget-Me-Nots attended the meeting.
Nada Savitch from Innovations in Dementia and DEEP
chaired the meeting. We split into two groups to discuss issues
around the Mental Capacity Act—these groups were facilitated
by Nada Savitch and Reinhard Guss.
Lord Hardie and Lord Swinfen along with Judith Brooke
(clerk to the Committee) kindly attended the meeting to listen
to the views of people with dementia.
Five students helped the meeting run smoothly and
took notes. We discussed such issues as:
· Who
makes decisions in your life? Are there decisions which you make
for yourself? Are there decisions which are made by others on
your behalf?
· If
someone has helped you to make decisions or made a decision for
you … What happened? What did it feel like?
· Have
you had any experience of someone assessing your 'mental capacity'?
· Have
you had experiences of Lasting Power of Attorney?
· Have
you had experiences of telling your bank or other organisations
that you have dementia?
What members of The Forget-Me-Nots said
This report summaries what was said at the meeting
across the two groups.
Direct quotes are used but (for privacy) they are
not attributed to named members of the group.
The conversations did not necessarily happen in the
order set out below.
About making decisions
The group all agreed that they all have the capacity
to make decisions, but that this is slowly changing. And other
people might be making more decisions on their behalf.
"It's like the door is slowly shutting"
"It moves more to my wife now than me"
"My wife tells me what to wear … she didn't
do that before I got dementia"
Some members feel they are still able make the same
decisions. Others feel less confident.
"I was the main decision-maker … but now
my wife can think it out better than I can"
"I still make decisions; they just might not
be the right ones" "I don't have confidence in my decisions"
"Everything's just the same, except I can't
think some things out now"
Some members found this change in decision making
difficult as it means they are losing independence.
"My wife has made decisions for me … it
doesn't feel good. I want to make decisions"
Some members thought sometimes decisions were made
about them for the right reasons.
"I want to be protected as I become more fragile,
less able to make decisions"
"In my world I'm not different [to how I was
before dementia]—I think I'm still alright"
"It's easier to take if you can see that the
decision is being made for your own benefit"
People felt that it is important that information
is presented in a way that is easy to understand.
Telling officials that you have dementia
Members of the group felt that they had been treated
differently when they had told people they had dementia.
Sometimes this was for the better—one member
had been in Lloyd's bank (which is working with Alzheimer's Society)
and had had a helpful response. Others had good experiences too.
"We have a great relationship with the bank
and they help us a lot, we always see the same person"
Others felt they were patronised and discriminated
against for having dementia, or just being older.
People had different thoughts about the needs or
desirability of telling officials about their diagnosis.
"I don't mind telling people, I just don't think
it's necessary yet" "I wouldn't tell the bank until
I was really downhill"
"I don't mind telling people, I just don't want
sympathy"
"With utilities, if they don't know you have
dementia, how can they help you?"
There was a suggestion that details of lasting power
of attorney could be added to Alzheimer's Society 'I have dementia'
cards.
Being assessed for capacity and best interest
People felt some apprehension about being assessed
for mental capacity. They felt it fluctuated and was especially
dependant on whether you were feeling anxious or depressed at
the time.
"It makes me nervous"
Some people did feel that people were judging their
mental capacity.
"I feel I might be prejudged if I've told someone
I have dementia" The concept of 'best interest' is a difficult
one, and many people are not aware of it.
"Best interest … that's difficult to define"
Bad experiences of Mental Capacity Act
Some members of the group referred to friends and
relatives who had bad experiences under the Act.
There was particular concern about cases where there
was no Lasting Power of Attorney and people had to work through
a solicitor.
"The wife can't access the money—she can't
get the money out without going to the solicitor"
"It costs £5000 a year"
"Why can't the carer go back and get the power
of attorney?" "Is there a standard fee?"
"Do you have a choice of solicitors?"
There was a feeling that that Act does not always
support those it says it is there to protect. And that the balance
between protecting people and stopping the minority that may exploit
people with dementia was sometimes wrong.
"The Act seems to be working against the innocent
rather than protecting them"
"How can we deal with this unscrupulous minority
without inhibiting the scrupulous?"
"Are people judged not to have capacity too
soon?" "The Act focusses too much on exploitation"
Lasting Power of Attorney
Lasting Power of Attorney was one aspect of the Mental
Capacity Act that was familiar to most people at the meeting,
although many people did not have one, and some people were not
clear about what was covered.
"Is the idea that it's just financial?"
"Older people might think it's not for them"
"It might be more important for someone with
young onset dementia, less so for someone in their 80s—we
don't really mind what happens to our money"
Most people agreed that it was a very good idea and
should be done early on.
"Make your wishes know now!"
"It's important to write things down" "Do
it early and put it on one side"
Many people felt that the process was complicated
and difficult to understand.
"It's difficult, it feels like going up a mountain"
"It takes a lot of thought—it's lengthy"
"It took me three months to get to grips with
it"
"The big pile of paper needs to be reduced"
In many people's experience it was an expensive process
that needed a solicitor.
"You need advice from a solicitor"
"I drew it up myself and got a lawyer to sort
it for me" "It cost me about £1000"
"A list of approved solicitors would be good"
There was a feeling that although it's a good thing
to do, people put it off or don't get round to it.
"It's too difficult—it puts people off"
"It's expensive and daunting"
"There needs to be more encouragement for people
to do it—we tend to park it"
"It's not just us who put it off, it becomes
a taboo subject—family members don't want to talk about
it either"
"We like to live for the day—we don't
want to discuss this all the time"
There is confusion about how power of attorney operates
with utilities and banks.
"Even if the attorney goes to the bank or the
utilities, they don't know that the power of attorney has been
given"
"The utilities will only speak to the person
whose name is on the account—they won't take the spouses
word for the fact that they have power of attorney"
People felt that organisations such as banks and
utilities should have access to information about who holds power
of attorney.
"Utilities should have access to that information"
"They should create a register where you can
check who has power of attorney"
Some people felt that power of attorney should be
an automatic right within marriage or part of the marriage vows.
But others felt that there were complications due to divorce and
people living together.
"In case of marriage, shouldn't be assumed?"
It was agreed that it can sometimes be difficult
to find someone to take on the attorney role.
"Decisions should be made by someone you trust"
"It's hard to find people you trust enough or
who want to do it" "I don't want to burden my children"
People felt that couples should make Lasting Power
of Attorneys together.
Information about the Mental Capacity Act
There was also a feeling that there is too little
information available about the Mental Capacity Act and Lasting
Power of Attorney in particular.
"There's not enough information about it generally"
"200,000 people need this information"
"Lots of people with dementia are older—how
do they know about it?"
"Why does everything have to be online?"
"There needs to be more advertising"
"We had a lawyer turn up to our post-diagnostic
support group to explain"
"It's important to be informed by someone you
trust"
But people agreed that at diagnosis there is often
an overload of information.
The voluntary sector, especially CAB and Alzheimer's
Society were thought to have a role. [The Alzheimer's Society
does have a good information sheet about the Act]
"The Alzheimer's Society could have a role in
informing people about the Act"
"Banks and CAB etc should be there to help you
fill in the forms"
Language
Some people didn't like the term 'Mental Capacity
Act' because of the association with mental illness.
It was felt that labels such as 'carer' and 'sufferer'
can foster stereotypes
"We still care for our partners even when we
have dementia".
Canterbury, 30 October 2013
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