104.Memorandum from the Alzheimer's Society
The Alzheimer's Society welcomes the publication
of the draft Bill which has received widespread support from members.
People with dementia and their carers have campaigned for new
legislation for over a decade. This Memorandum documents their
experiences and powerfully highlights the urgent need for reform.
The Alzheimer's Society is a member of the Making Decisions Alliance
and has contributed to its submission to the Committee.
People with dementia represent the largest single
group of adults affected by incapacity. The Society welcomes the
draft Bill's proposals to put into law the principle that all
adults are assumed to have capacity to make decisions for themselves.
This is vital for people with a diagnosis of dementia who are
currently often wrongly assumed to be incapable of making decisions.
The new Bill promises to give people with dementia
more control over issues such as the treatment they receive, how
they spend their money and where and how they live. It will also
allow them to plan for the future and choose who they would like
to make day-to-day decisions on their behalf when they are no
longer able to do so. Advance directives will give people assurance
that their wishes about end of life treatment will be respected.
The Society proposes that the Bill:
is named the Mental Capacity Bill
to reflect the presumption of capacity enshrined in the Bill
includes detail on how capacity will
be assessed, and by whom
includes a legal right to access
independent advocacy at particular points in the assessment process
includes explicit restrictions on
the use of general authority to act
recognises advance statements
requires deputies to comply with
a valid advance directive
sets out an appeal mechanism by which
people can challenge an assessment
allows people to nominate a research
proxy or attorney
refers to "personal best interests"
rather than "best interests."
The Society believes that many people with dementia
and their carers will not benefit from new legislation unless
early diagnosis improves. The effective implementation of the
draft Bill depends on significant investment in public and professional
1. THE ALZHEIMER'S
1.1 The Alzheimer's Society is the leading
care and research charity for people with dementia and their carers.
It was founded in 1979 as the Alzheimer's Disease Society. It
is a national membership organisation, with over 25,000 members
and operates through a partnership between over 250 branches and
support groups and the national organisation in England, Wales
and Northern Ireland.
1.2 The Society has expertise in information
and education for people with dementia, their carers and professionals.
It provides helplines and support, runs quality day and home care,
funds medical and scientific research and gives financial help
to families in need. It campaigns for improved health and social
services and greater public understanding of all aspects of dementia.
1.3 People with dementia represent the largest
single group of adults affected by incapacity. There are over
700,000 people with dementia in the UK. Dementia affects one person
in 20 aged over 65 and one person in five as they reach over 80
years of age in the UK. As the population ages so the number of
people with dementia will grow. There are also over 18,000 people
with dementia aged under 65 years of age in the UK.
1.4 People with dementia lose capacity over
time. Alzheimer's disease is the most common form of dementia
and the rate at which a person deteriorates will vary from individual
to individual. With earlier diagnosis and new treatments, people
are retaining capacity for longer. They are also living longer
with dementia and increasing numbers of people are now living
with dementia for 20 years. Carers continue to undertake most
of the caring for people with dementia and this draft Bill has
important implications for both people with dementia, their carers
as well as a range of professionals.
1.5 The Alzheimer's Society has been campaigning
for new legislation on mental capacity for over a decade and welcomes
the introduction of the draft Bill. The Society has been a core
member of the Making Decisions Alliance and has contributed to
its submission to the Committee.
1.6 The Society decided to co-ordinate responses
from its members rather than ask them to write individually to
the Committee. There is huge support for this legislation.
2. WAS THE
2.1 Yes. The Alzheimer's Society has had
the opportunity to input into policy in this area over a number
of years and believes that this has resulted in a draft Bill which
will help to improve the lives of millions. The Society is very
concerned that there is no further delay to the implementation
of this urgently needed legislation.
2.2 The Society has undertaken extensive
consultation with its members, through its website, publications
and through regional meetings. It is the words and experiences
of people with dementia and their carers that have helped to inform
3. ARE THE
3.1 Yes. The draft Bill sets out new powers
which would support and protect people with dementia. In particular,
these objectives would:
confirm the importance of presuming
each individual has capacity until proven otherwise
support a person with dementia to
make as many of their own decisions as possible
give carers more rights in day to
day decision making on behalf of someone with dementia who does
not have capacity
allow a person with dementia to choose
who they would like to make decisions for them when they are no
longer able to do so
enable people with dementia, while
they have capacity, to make an advance directive which they know
will be legally binding
protect more people with dementia
without capacity from abuse and neglect.
4. DOES THE
4.1 The presumption of capacity
4.1.1 The draft Bill highlights the importance
of presuming that an individual has capacity. It is one of the
underpinning principles that threads its way throughout the document.
As such, it deserves to be given a higher priority and should
be set out in Clause 1 of the Bill. Moreover, the title of the
draft Bill, the Mental Incapacity Bill, undermines this principle.
The Alzheimer's Society believes that the Bill should be known
as the Mental Capacity Bill. This would help to emphasise the
importance of assuming capacity, rather than incapacity.
4.2 Maximising decision-making
4.2.1 The Alzheimer's Society supports a
decision-specific functional test of capacity which focuses on
what a person can do rather than on what they cannot.
4.2.2 The draft Bill introduces a new definition
of capacity which can only help to empower a person with a diagnosis
of dementia. The Alzheimer's Society supports this functional
definition of capacity which allows for variation over time and
place, as well as according to the type of decision to be made.
As one carer explained "there are degrees of capacityincapacity
does not happen overnight. "A person with a diagnosis of
dementia is often assumed to have little or nothing to contributeto
have lost their faculties and their judgement. The use of terms
such as "living death" and "the loss of self"
reinforce negative images of people with dementia and do little
to help foster the notion that they will have different levels
of capacity to make their own decisions and plan for the future.
4.2.3 The need for a functional test of
capacity is underpinned by comments made by members. Many reported
that "people generally assume that dementia patients can't
make decisions for themselves" while others wrote of their
own mistaken assumptions:
"I made the mistake of assuming my husband
couldn't make decisions for himself. A sharp telling off from
him that he `wasn't completely gaga yet' made me think again.
Being involved in decision making rather than just doing as I
suggest has made a great deal of difference to his capability.
His mind seems to be growing by doing rather than degenerating."
4.2.4 Much good practice does exist and
the introduction of new mental capacity legislation would bring
an important practical and cultural shift. While some professionals
reported that every effort was made to involve a person with dementia,
others confirmed the need for greater attention to be paid to
"My experience is that the professionals
make the decisions. Very little effort is made to include a person
with dementia and often only a token gesture. There needs to be
criteria in place to ensure specific efforts are made and recorded."
"Assumptions are usually made that people
with dementia cannot make decisions and are routinely excluded
from the decision-making process."
4.2.5 While the functional definition of
capacity is clearly explained, very little is said on how capacity
will be assessed, when, and by whom. Although the Code of Practice
will include the detail on assessment, being told that you do
not have capacity to make your own decisions removes such a fundamental
right that greater safeguards must be in place and included on
the face of the Bill. Further detail on how capacity will be assessed,
and by whom, needs to be included.
4.2.6 As one carer explained "unfortunately,
there is not one single capacity assessment that will fit all
purposes and all people." There is much good practice around
assessment and the draft Bill codifies this. Several members reported
excellent experiences of skilled, sensitive, multi-disciplinary
"The best and most helpful indication we
have had of how incapacity is assessed is from our clinical psychologist
in her five one hours sessions with my wife. Our GP, occupational
therapist, admiral nurse and Alzheimer's Society staff have all
directly or indirectly contributed to assessment of my wife's
mental incapacity mostly by simple questions in discussion. It
will be most important for the method and content of the Code
of Practice of the `final assessment' to be fully explained to
the patient and carer."
4.2.7 However, others spoke of a battle
to get a proper assessment. Previously, many health professionals
dismissed dementia as "old age" and people were all
too frequently told that nothing could be done. This experience
was highlighted by one carer who said: "It was three years
before our GP accepted that it was more than `just getting old'
and then we were referred to the psychogeriatric consultant. Obviously
by that time it was too late."
4.2.8 The Audit Commission's recent research
reinforces such a view. Over 1,000 GPs replied to their survey.
Only about half of them believed that it was important to look
for early signs of dementia or to diagnose early and less than
half felt that they had received sufficient training for dementia.
Many said that they saw no point in looking for an incurable condition.
Early diagnosis and assessment allows people with dementia and
their carers access to social and health care interventions.
4.2.9 Unless early diagnosis of dementia
improves, people will be denied opportunity to make plans for
their future. Several members commented on how rapid the decline
was: "my husband had a series of mini strokes and was soon
unable to speak or sign his name." Others were relieved to
have managed to get the EPA signed just in time.
4.2.10 Clause 2(3) states that a person
should not be "treated as unable to make decisions unless
all practicable steps to help him do so have been taken without
success." It is important not to underestimate the current
situation in which many people with dementia still do not even
get told their own diagnosis, let alone involved in decisions
about their care.
4.2.11 The Society believes that an independent
advocate can play an essential role in the assessment of someone's
capacity and help to ensure that all steps have been taken before
an individual is assessed as not having capacity. In particular,
advocacy should be made available at particular "crunch points"
to ensure that a person is supported to make as many of their
own decisions as possible. These include major life changing decisions
such as where someone lives or the appointment of a deputy. It
is essential that people with dementia are not excluded from decision-making
through a lack of expertise or resources. One member reported
that she had been "assured that if staffing levels were improved
then more effort would be made to include people with dementia
4.2.12 Some members highlighted their concern
over the use of cognitive function scores being used as a test
for capacity. The reliance on the use of one particular test,
the mini mental state examination, to assess capacity stems from
its new use as an assessment tool in the prescription of the drugs
for the treatment of dementia:
"Assessment is made regarding the prescription
of drugs but this is repetitive and not a complete assessment
of how I am."
"My wife was assessed originally by mini
mental state examination. She failed badly but was still able
to socialise and interrelate with people."
4.2.13 In addition, the Alzheimer's Society
believes that there should be a mechanism for an individual to
challenge a decision about their capacity in the draft Bill and
they should be made fully aware of this right.
4.3 Allowing a person to choose who they
would like to make decisions for them when they are no longer
able to do so.
4.3.1 The Alzheimer's Society strongly supports
the proposal to extend the current Enduring Power of Attorney
(EPA) for financial affairs to a Lasting Power of Attorney (LPA)
to include financial, health and personal welfare. Members endorsed
these proposals wholeheartedly:
"I shall use the LPA as soon as it becomes
available. Presumably it will supersede the EPA that I have already
given to a couple of younger cousins."
4.3.2 Many people who are given a diagnosis
of dementia at an early stage are relieved to have had an opportunity
to put their affairs in order and plan for the future. One carer
wrote that "my husband signed an EPA, witnessed by the doctor,
while he still understood what he was doingand he seemed
relieved to have done so. I registered it later when the need
arose and this worked well for us." The introduction of LPAs
strengthens the rights of people with dementia to make plans for
their future and gives them greater choice. It also introduces
a degree of protection as well as reassurance that their wishes
will be followed as far as is possible.
4.3.3 The need for health/welfare attorneys
is apparent. Carers are often hindered in their caring role because
they are not consulted or involved in important decisions about
someone with dementia who has lost capacity. For example, one
carer wrote "as my mother's main carer, I needed to know
about her medication and any changes in dosage. But they wouldn't
tell me because my mother couldn't consent to it."
4.3.4 The draft Bill includes proposals
for new safeguards to protect the person making an LPA from abuse.
The Alzheimer's Society supports the safeguards that both the
donor and donee have to sign the document and are both notified
on application and registration. The Society believes that this
is an improvement on the current system operating with EPAs. Although
the proposals also retain a welcome element of choice the flexibility
also allows for the potential of abuse. For example, it is up
to the donee to decide who needs to be informed about the creation
of the LPA. The Society recommends that the LPA is signed by a
third person other than the donor and the donee.
4.3.5 A person can only make an LPA while
they still have capacity. The draft Bill also proposes that a
person obtains a certificate to prove that they have capacity
to make an LPA. On consultation, the need for a certificate of
capacity prompted very varied responses from members. There was
little consensus over how to balance the need for protection and
a reduction in bureaucracy. Many carers felt that the need for
a "certificate of capacity" went against a presumption
of capacity which is enshrined in the draft Bill. Others felt
that it was another barrier and would discourage people from making
an LPA. However, most erred on the side of caution and the Society
agrees that additional safeguards are necessary. As one carer
stated "bureaucracy is awful, but the kind of abuse involved
in these situations is sometimes worse." Another wrote "that
I am afraid we now live in a world where people need more protectioneven
at times, within their own family."
4.3.6 Several members were concerned that
a capacity certificate would deter many people in making an LPA,
particularly those who were not middle class. For example, one
member wrote: "All very well for middle class people who
are acquainted socially with doctors and solicitors but a big
obstacle for low income groups." Others remained concerned
about the ability of doctors and solicitors to really know the
person well enough to confirm a statement of capacity. The Society
would welcome further consideration of the use of a "springing
clause" where the individual making the LPA chooses who should
decide that they no longer have capacityin most cases this
is most likely to be someone who knows the individual well.
4.3.7 The Alzheimer's Society recommends
that a similar mechanism to obtaining a passport is used, thereby
keeping it as accessible and affordable as possible. This would
mean that a broader range of people in the community could sign
the document to say that to say that they believed the person
had capacity to make an LPA. The Society is anxious that people
are not required to pay for an additional fee for a "certificate
of capacity", for example from their GP.
4.3.8 The Society supports the proposal
that a person may choose to hand over responsibility early for
financial affairs while they still have capacity. Indeed, this
is a provision, that many people currently choose to take up under
the EPA system. However, a person acting as an attorney will not
be able to make welfare or health decisions while an individual
still has capacity. This is correct for any healthcare decisions,
but the Society believes that some people will wish to hand over
some personal welfare decisions early. Indeed, on consultation
many members supported this move:
"I see no reason why the LPA should not
be registered early provided that any decision can be overridden
by the patient while they still have the mental capacity to do
"It should be possible to register the document
while an individual still has capacity if that is the wish of
the individual, as with the existing EPA, to stipulate that it
should not be registered, or that the donee should not act until
incapacity is proven. A similar condition could also be written
in about personal welfare."
4.3.9 Moreover, the proposals in the draft
Bill on LPAs differ on this issue from those on the Continuing
Power of Attorney (CPA) proposed in Making Decisions. It was proposed
initially that it would be possible for the attorney to exercise
powers in relation to financial and welfare issuesbut not
healthcarewhile the donor is still capable, if that was
the donor's wish. The Society would welcome further clarity on
the change in this position and whether it really is workable
and in the best interests of the person with dementia. It is important
to note that, in practice, decisions about care often relate to
both financial matters and personal welfare. It is difficult to
separate financial decisions and welfare ones when it comes to
moving a person to a care home for example.
4.3.10 At the moment, with the current system
of EPAs many carers act as an attorney without actually registering
it. Simply by signing the form they believe that they have a right
to make decisions. This is currently not the case and is not envisaged
for the proposed LPA. This, the Society believes is right. The
donor should be able to choose when to register the LPA if they
are aware that their powers are failing. However, many people
will not have the insight to do this, leaving it to friends and
family members nominated to decide when the right time to register
the LPA is. This can be a very difficult decision:
"99.9 per cent of the time my wife has no
idea what is going on but very rarely she knows exactly what she
wants and is utterly logical. Can we ignore that 0.01 per cent?"
4.3.11 Careful guidance will be required
to ensure that those acting as attorneys are supported to enable
the donee to make as many of their own decisions as they would
wish. While the majority of people with dementia progressively
lose capacity, many will have fluctuating levels of capacity during
the early stages. It is important that the mechanisms are put
in place which are affordable and flexible enough to cater for
4.3.12 Although reduced rates are available,
a person with dementia currently has to pay £220 to register
their EPA. On consultation, very few thought that this was a reasonable
cost, most thought it was excessive ("especially once solicitors'
fees were added", "£220 is over two-weeks pension",
"this is a further tax on the elderly and disabled").
Many members felt that this fee would dissuade people from registering
an LPA and increase a person's vulnerability to abuse.
4.3.13 One final point on LPAs relates to
the language used. The terminology of donees and donor is confusing
and runs contrary to the Wolfe reforms. The Society recommends
that the use of donor and attorney is more accessible.
4.4 Rights to make day-to-day decision by
4.4.1 Dementia is a progressive, degenerative
condition and one in which a person steadily loses capacity to
make their own decisions. The Alzheimer's Society welcomes the
move to give carers legal powers to act on behalf of a person
with dementia who does not have capacity. This would plug a significant
gap in current legislation. Moreover, the failure to involve carers,
who currently undertake most of the care of people with dementia,
often leads to poor quality dementia care. For example, one carer
reported that "staff acted as if they had sole responsibility
for my mother and knew exactly what she wanted without consulting
us when they didn't even know her name properly." Another
stated simply that "I have never felt that I was fully involved
4.4.2 Most carers of people with dementia
are partners and often frail themselves. Two-thirds of people
with dementia continue to live in their own homes. This includes
a significant minority who live on their own, but most people
with dementia are cared for by family members. Many recognise
the huge responsibility of acting on someone else's behalfand
often feel unsupported in their role. In addition, carers often
feel very disempowered when trying to advocate for a person with
dementia. The new general authority to act will help carers feel
that they (a) have a right to be involved in decision making and
(b) have a duty to be consulted. Currently, many carers do not
feel able or entitled to speak out. It is hoped that the general
authority to act will empower carers with new rights and give
them increased confidence to act in the best interests of the
person without capacity.
4.4.3 The draft Bill proposes that both
carers and professionals will have an equal general authority
to act in the best interests of the person with dementia. The
introduction of the general authority raises new issues in relation
to the different levels of duty placed on professionals and carersall
of whom will have a general authority to act. As one carer highlighted:
"Legislation must bear in mind that the
vast majority of carers are likely to be non-professionals, with
foibles, problems and a life of their own to live. In my experience
the job is 24 hours a day, seven days a week, 52 weeks a year
with no financial reward; just the satisfaction of doing their
duty by their loved ones and making their lives throughout this
dreadful and prolonged period, as comfortable as they can; doing
for them as they would wish to be done by themselves."
4.4.4 The Alzheimer's Society would welcome
further clarification on how the general authority to act will
work in practice. What support will be available to help carers
and professionals use this authority appropriately? Professionals
have experience of, and are accustomed to, working to a code of
practice. But little is known about how a separate code of practice
will apply to carers. Further debate on this is necessary.
4.4.5 The draft Bill, for example, makes
no distinction between a decision made by a carer or a professionalboth
of whom believe they are acting in a person's best interests.
And as one Alzheimer's Society branch explained, decision-making
works well "provided the family and friends agree with professionals
about what's best." The Alzheimer's Helpline receives hundreds
of calls from carers every year who feel that they are unable
to argue against professionals. Several carers felt strongly that
"professionals alone should not have the right to make decisions
without the involvement of a wholly independent adviser".
4.4.6 The Alzheimer's Society believes that
independent advocacy would help to ensure that the best interests
of the individual are at the forefront of decision-making as well
as reduce the need to resort to court for the resolution of conflict
between carers and health and social care professionals, particularly
for common disputes such as moving someone to a care home.
4.4.7 Where shared decision-making can't
be reached, disputes can be referred to the court for resolution.
A person wanting to act on behalf of a person with dementia without
capacity can also apply to the court for a single order. This
area also represents another example of where advocacy could play
and important role and reduce the need for protracted and expensive
4.4.8 In addition, the Society believes
that the general authority confers too broad a power and restrictions
should be placed its use. Following consultation, members felt
strongly that the following acts should not be permitted by someone
with only a general authority to act:
moving someone, for example into
a care home
managing financial affairs over a
4.4.9 To avoid abuse the Bill should outline
carefully what powers are conferred by a general authority to
act. For example, people with dementia in care homes represent
one particularly vulnerable groupespecially those who have
no visitors. While three-quarters of residents in care homes have
dementia, most care staff have little training or understanding
of dementia. The Society is concerned about the use, and monitoring,
of the general authority to act.
4.4.10 This would mean that if decisions
have to be taken that fall outside of everyday decisions, such
as the giving of medication or the payment of bills, neither the
carer or the professional alone could make a decision. This would
help to improve the quality of life for many people with dementia
and help to identify their best interests.
4.4.11 It is anticipated that joint discussion
and decision-making would identify the best interests of the person
with dementia and lead to prompt medical attention where appropriate.
One of the problems of the current situation is that professionals
are often reluctant to act when an individual cannot give consent,
"My mother had dementia and very bad cataracts.
Vision would have improved her quality of life enormously but
the doctors refused to operate because we couldn't agree on her
behalf and she certainly couldn't."
4.4.12 There will be a great need for public
education around the general authority to act. One member accurately
identified one of the significant problems surrounding general
authority when she asked "will there be an exhaustive list
of the `everyday decisions'"?
4.4.13 The Society recommends that the principle
of best interests is amended to "personal best interests."
This will ensure that the person without capacity is protected.
For example, a person with dementia in a care home who is up all
night may be given neuroleptic drugs to sedate them. This action
might be in the best interests of other residents and of the staff,
but is unlikely to be in the best interests of the person with
dementia. However, as one carer highlighted, the provision of
care, and an assessment of best interests is often dictated by
"My aunt `wishes' to have more than one
bath per week but there are insufficient staff to grant those
wishes although the home owners said she should have more and
she pays a fortune to be there. My mother could not swallow biscuits
and `wished' for a piece of cakebut the home owner said
cake was too expensive."
4.5 Advance directives
4.5.1 The Society welcomes the inclusion
of advance directives in the draft Bill. An advance directive
enables a person with dementia to project their informed consent
into a situation when they are no longer able to give it, thereby
protecting their right to personal autonomy and choice and giving
directions to carers and professionals about making decisions
about treatment in advance of incapacity.
4.5.2 An advance directive gives people
assurance that their wishes will be respected. It is also a tool
which requires you to speak to others about your wishes. Several
members reflected that for many this may not be feasible:
"I haven't made an advance directive. I
don't want to think about the later stages of dementiaI
am living for the present."
"I find it almost impossible to get my wife
to think about the futuresome professional counsel may
be required. A suitable checklist would make this easier."
4.5.3 But as several carers highlighted,
an advance directive can play an important role in making one's
"I intend to make an advance directive,
having recently been involved with a situation where the family's
preferences were directly opposed to those of the consultant with
no real means of knowing what the lady would really have wanted."
"I approve of this concept of an advance
directive. At one stage I had to decide whether or not my wife
should be force fed. Following a family consultation with the
profs involved, two of my three children agreed with my decision
not to do so, but for a long time there was friction between me
and the daughter who did not agree."
4.5.4 Although advance directives are binding
under common law they are not widely known about or easily accessed.
One carer, as part of a research study on the ethics of dementia
care, when asked about advance directives said:
"I think it would take an enormous responsibility
for decision making off my children in my case. In fact we asked
our solicitor in 1993 if he would help my husband to draw up an
advance directive and he refused."
The Society has long supported the use of advance
directives and issued its own advance directive in September 2003
(appendix one). The Bill would make advance directives binding
under statute law and provide people with dementia with precision
about how they would work.
4.5.5 The inclusion of advance directives
in the draft Bill will help reduce the misunderstanding and confusion
which surrounds them. On consultation with members, several expressed
concern about the use of advance directives. High levels of confusion
exist with many believing that it is the same thing as euthanasia
or assisted suicide. The Alzheimer's Society believes that it
is important to establish that an advance directive is entirely
distinct from the promotion of euthanasia. Refusal of medical
treatment at the end of life is distinct from a positive action
to end life.
4.5.6 People with dementia in the late stages
often experience great difficulty with swallowing. When this occurs
in the final stages of the illness, most people accept that this
is a part of the dying process and the most appropriate response
is palliative care. The goal of dementia care at this stage is
therefore one of comfort and emotional wellbeingnot of
prolonging life. The Society believes that a feeding tube is rarely
a source of comfort at this stage of a terminal illness and that
it is inappropriate for a person with advanced dementia to be
given artificial hydration and nutrition for the sole purpose
of prolonging life. In the advanced stages of dementia, quality
of life rather than length of life should be prioritised.
4.5.7 The Society has serious concerns about
the frequency with which people in the terminal stages of dementia
are artificially fed and hydrated by a tube. The Society advocates
that when a person is no longer able to eat, or is taking little
or no fluids by mouth, the best way to alleviate the pain and
distress of a person in the final stages of dementia is through
one-to-one nursing. Family members, carers and nursing staff who
sit by the bedside of a person with advanced dementia can provide
appropriate quality care. A carer can offer sips of water or moisten
a person's mouth and thereby provide a more appropriate and less
invasive alternative to artificial hydration. The use of a tube
for artificial hydration and feeding should not be considered
best practice in the provision of care of people in the advanced
stages of dementia.
4.5.8 An advance directive cannot authorise
a doctor to do anything unlawful, such as practise euthanasia
or act against their clinical judgment. The Society recommends
that an advance directive should not authorise a refusal of "basic
care" such as the maintenance of bodily cleanliness, alleviation
of severe pain and the provision of direct oral nutrition and
4.5.9 The Society believes that advance
directives should be regularly reviewed while the person still
has capacity, and written following full consultation between
a patient and doctor. It is important that they are as contemporary
4.6 Protection of people with dementia without
4.6.1 The Society supports the creation
of both the revised Court of Protection and the Public Guardian.
These will help to protect some of the most vulnerable members
of society. It is essential that both are sufficiently resourced
to ensure effective monitoring as well as public and professional
4.6.2 The draft Bill requires additional
safeguards to ensure that people with dementia are adequately
protected. These include further guidance on assessment, robust
mechanisms for people to challenge an assessment of incapacity
and restrictions on the use of general authority to act. In addition,
the Society recommends that a person who has been convicted of
abuse should not be named as a deputy or a lasting power of attorney.
Further debate is required on whether some professionals, such
as a manager of a care home, should be appointed as deputies or
LPAs because of the potential conflict of interest.
4.6.3 While it is right that the emphasis
is placed on maximising decision-making, the Society would like
to highlight the fact that people with most forms of dementia
will deteriorate and eventually be unable to make any decisions
for themselves. It is therefore essential that the proposals in
the draft Bill recognise that most people with dementia will require
ongoing protection and mechanisms for substitute decision-making.
It will not be appropriate for carers to have to apply repeatedly
for powers to act. As one carer explained:
"my husband who had multi-infarct dementia
would have been quite incapable of decision-making for many years
before his death."
4.6.4 The need for skilled assessment is
vital to ensure that people are enabled to make as many of their
own decisions as possible. However, skilled assessment is also
essential to ensure that people with dementia are identified and
that loss of capacity is recognised. Many carers reported that
the problem was one of capacity being assumed when the person
had dementia. Hospitals were frequently named as a setting in
which staff seemed unaware of the needs of people with dementia.
4.6.5 Often, people with dementia do not
have insight into their condition, or are unable to accept that
something is wrong. One daughter wrote of her experiences:
"As a former nurse, my mother was extremely
good at covering up her problems and was extremely plausible.
Her doctor reacted with shocked amazement at our suggestion that
my mother had dementia`There's nothing wrong with your
mother. I saw her only the other day and had a conversation with
her. She's fine.' This was at a time when my mother was putting
the electric kettle on the gas ring, entertaining phantom meetings
of teachers in her front room, turning up at the hairdressers
at 2am and living on a diet of biscuits having forgotten how to
4.6.6 It is this group of people who are
particularly at risk of neglect if proper assessment fails to
occur. Health and social care professionals have often told distraught
carers that there is nothing they can do if the individual refuses
help. As one carer explained"just because my mother
knew the queen was called Elizabeth she was declared competent
to make decisions and left in excremental squalor." The draft
Bill must enable carers and professionals to act in the best interests
of the individual.
4.6.7 Access to independent advocacy can
also play a vital role in protecting the interests of people with
dementia who do not have capacity. For example, one carer detailed
a common scenario in which advocacy could help: "the greatest
need is for the protection of those patients who have no close
family to act as carer, or for those whose carer is also elderly
and unable to act in a fully competent manner for a variety of
reasons. My view in such cases is that an independent advocate
should be appointed to ensure that the patient's interests are
4.6.8 The draft Bill proposes that a person
will not be able to force a person without capacity to comply
with a proposed action unless it is essential to prevent a substantial
risk of significant harm to the person concerned. The Alzheimer's
Society believes that this is too wide a power and that the potential
for abuse too high. For example, it might be interpreted by some
that it is necessary to lock people in or restrain a person with
dementia in order to prevent harm. The use of force should not
be used unless immediate harm is imminent.
5. MIGHT LESSONS
5.1 The Society has learnt a great deal
from Alzheimer's ScotlandAction on Dementia and its experiences
of helping to implement and monitor the Adults with Incapacity
Act (2000). In particular, the Society encourages further discussion
with colleagues in Scotland on:
resolution of conflict and the system
for single shared assessment and review
the best way to ensure that effective
monitoring and safeguards are in place.
5.2 The widespread use of health proxies
and advance directives across the United States means that there
are sophisticated tools and support available to support people
who wish to plan in advance for a time when they may no longer
have capacity. The use of advance directives is common and useful
checklists and guidance are widely available.
6. ARE THERE
6.1 The Society has identified a number
of important omissions in the draft Bill in paragraph 4. These
include the lack of detail on how capacity will be assessed and
by whom, as well as the need to include access to independent
6.2 The draft Bill would be improved if
its proposals were broadened to include advance statements, and
not just advance directives. Advance statements help those appointed
make decisions on what they know the person would have wanted
and not just what they would have refused. For example, the use
of advance statements would help avoid the situation in which
a person is nominated to act as a health proxy/given lasting power
of attorney for healthcare without actually having discussed with
the donee what their wishes might have been.
6.3 The Society believes that advance statements
are a valuable way in which people can document what they would
like to happen if they lose capacity. The right to make an advance
statement should be enshrined in law and understood to be valid
documentation of an individual's wishes and preferences. The Society
proposes that an advance statement is subject to the tests of
reasonableness and practicality.
6.4 Interestingly, many carers who were
partners/spouses felt that advance statements were not necessary
because they knew what each other wanted:
"I was fortunate that after 52 years of
a super marriage my late husband and I needed no tape recordings
or diaries. We knew instinctively what the other half would wish."
6.5 Not all of us are so fortunate, and
many people with dementia will not have family or friends to care
for them. Others recommended that "the best advice is to
tell as many people in the family (and outside) of particular
preferences in the hope that someone will remember them. If there
is a written record you can re-read it." Another suggested
that "everyone should be encouraged to leave a personally
written record. My friends and relatives do probably know my wishesbut
that is not good enough." One residential care provider shared
their use of Department of Health consent forms to try and establish
with family representatives what the person's previous views were,
including the use of medication, group living, alternative therapies
and the desire to be independent.
6.6 In addition, the Alzheimer's Society
believes that the effective implementation of the draft Bill depends
on significant investment in public and professional education/awareness
6.7 Even under the current system of EPAs,
which has been running for several years, huge confusion exists
about the extent of the power conferred upon the attorney. Many
mistakenly already believe that they have been given powers to
make decisions on personal welfare and health matters. Indeed,
following our consultation on the draft Bill one carer wrote:
"I am horrified. I thought as I had a power
of attorney over my husband's affairs I had to be consulted regarding
the giving of medication."
6.8 It is not only members of the public
that will need better information, but professionals as well.
Carers acting under an EPA continue to report "a huge wall
of ignorance, apathy and incompetence about the EPA. We might
just as well have announced that we came from Mars." But
it is not only financial institutions and staff who will need
to understand what a lasting power of attorney is, but a very
broad range of professional groups. The awareness raising and
training is therefore substantial and underpins the success of
implementation of any new legislation.
6.9 The participation of adults without
capacity in research raises many ethical issues. People in the
early stages of dementia are still able to talk about their participation
in current and future research. This means that they can be given
the opportunity to both discuss the implications of participation
in a research project and express their views with their carers
and the professionals who care for them. People with dementia
are capable of expressing their feelings and preferences well
into the progression of the disease.
6.10 The Society supports the view that
people who are unable to give legal consent to clinical trials
should be given special protection. An attorney would only be
able to consent to participation in research if they have been
given specific powers to act as a "research proxy" through
the creation of an LPA. Interestingly, research shows that proxies
often have different views on participation in research than the
people for whom they speak. This highlights the need for discussion
and documentation of an individual's views. Advance statements
would also allow people with early stage dementia to express their
broad wishes regarding research participation. Assent should always
be obtained from the person with dementia. The Society also believes
that the research proxy should be able to withdraw the person
from the research at any point even if this contradicts the advance
statement or any expressed preferences.
6.11 Non-therapeutic research, by definition,
tends not to be in the individual's best interests. Many people
with dementia feel strongly that they wish to participate in research
that may provide some good to other people and understand that
they will derive no personal therapeutic benefit. Indeed, many
people with dementia express such a sentiment to their carer and
are willing to experience potential distress and discomfort in
the hope that it will promote understanding. This is a complex
area which is fraught with ethical problems. In particular, genetic
research demands particular attention. The collection of a blood
sample that could be used to analyse genetic data could be seen
as non-therapeutic research. Research into the genetics of various
forms of dementia may depend on people with a diagnosis donating
their blood for research that is unlikely to have any direct benefit
6.12 The attendant demands of protecting
the best interests of the person with dementia and advancing knowledge
through research may result in a conflict of interest between
the person with dementia, their carer, and the researcher. While
it is important that people with dementia have the same opportunities
to participate in research as the rest of the population, they
are a vulnerable group whose rights must be protected. Further
work on the use of advance statements and research proxies would
be welcome, given the different investments and interests involved.
7.1 The words of people with dementia and
their carers highlight the importance of this draft Bill:
"Introduce this Bill as soon as possible.
Too many carers are struggling to cope with insufficient back
up and no legal insights to care for their loved ones properly."
"New legislation should be introduced as
soon as possible so that people with dementia can benefit now
and know that their views are important and taken into consideration.
People without dementia have their say in their own treatment
and so should we."
41 Audit Commission, 2000, Forget me not: mental
health services for older people, London: 21. Back