APPENDIX 17
Memorandum by the Alzheimer's Society
(EA24)
1. The Alzheimer's Society is the leading
care and research charity for people with Alzheimer's disease
and other forms of dementia, their families and carers. It is
a national membership organisation and works through nearly 300
branches and support groups. The Society has expertise in information
and education for carers and professionals. It provides helplines
and support for carers, 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.
2. There are over 700,000 people in the
UK with dementia. Their illness makes them particularly vulnerable
to abuse. The mistreatment or abuse of people with dementia either
by a professional or a relative is usually preventable through
adequate support, training and ongoing supervision.
3. People with dementia can be subject to
mistreatment or abuse in residential and other care settings.
This may take the form of financial, psychological, discriminatory,
emotional, sexual or physical abuse and neglect. The Alzheimer's
Society welcomes the increased public attention that has been
given to mistreatment or abuse in recent years.
4. Abuse and neglect of people with dementia
may be by the state, care workers, other professionals as well
as by family members and carers.
5. Mistreatment takes place in the context
of a relationship. It is important to make a distinction between
carers—who generally have a shared history and experience
with the person for whom they are caring actively, willingly and
unpaid—and care workers who are paid, have a formal relationship
with the person for whom they are caring, are supervised by others,
have limited hours and are free to stop caring at any time.
6. Caring for a person with dementia can
be very demanding. People with dementia sometimes behave in ways
which seem aggressive or violent as they try and deal with their
experience of dementia which could involve high levels of stress,
frustration and fear. This behaviour can be highly stressful for
carers and care workers and highly predictive for mistreatment
and abuse. There is ample evidence that carer and care worker
stress is related to levels of support. Greater understanding
about the disease process and ways of working with people with
dementia can help, eg improved communication skills.
7. The Alzheimer's Society receives many
calls from carers and people with dementia concerned about financial
abuse. Examples include professional carers stealing the person
with dementia's cash withdrawal card and taking a large amount
of money from their account. Another is a member of the family
persuading the person with dementia to give them enduring power
of attorney, which gives them control over their money. Because
of the way dementia can affect an individual, it can often be
difficult to determine when financial abuse occurs. Memory loss
and other impairments may lead to a person forgetting to collect
their pension or pay their bills, for example. People sometimes
miscalculate how much money they have and may withdraw money repeatedly
from the bank even though they do not need to do so. This leaves
people with dementia open to exploitation.
8. The poor standard of care received by
people with dementia constitutes another type of abuse experienced
by this group. While the care in some nursing and residential
homes is exemplary, we receive many letters and calls from carers
horrified at the treatment experienced by their loved ones. A
study of the quality of care in NHS and private sector facilities
for people with dementia found not even one of the homes studied
provided even a fair standard of care. [3]There
are a variety of factors that lead to poor care, including poorly
trained staff, staff who feel unvalued and unmotivated to do a
good job and assumptions about the poor quality of life of people
with dementia. Many people incorrectly assume that people with
dementia do not have the capacity to get enjoyment out of life
and that efforts to stimulate them and look after them properly
will go unnoticed. A letter from a woman who's father has Alzheimer's
disease gives one example of this all too common experience:
"He presented as distant and was once again
hungry and thirsty. When he was gently encouraged to drink and
eat he brightened considerably. When his socks were removed they
were dismayed to find the extent of the sores one of which was
infected. His feet were still dirty."
9. The assumption that people with dementia
are less sensitive to pain and discomfort than other people can
also lead to poor care and neglect on a general hospital ward.
Staff being untrained in caring for people with dementia exacerbates
this. A call received by our helpline illustrates this point:
"A man rang because his wife was in hospital
and she fell out of bed. No one noticed and he was told not to
worry because she couldn't feel pain anyway. She had actually
broken her hip and died a few weeks later. He was ringing to check
that she wouldn't have been in pain."
10. The overuse of catheters is another
example of abuse experienced on hospital wards. There is evidence
that these are used for no medical reason, but to make life easier
for staff on the wards. Adequate staffing levels would help to
alleviate this problem.
11. The treatment of patients in Rowan Ward,
part of the Manchester Health and Social Care Trust is an example
of elderly people with dementia being physically and emotionally
abused by professionals and care staff in a position of trust
and power. The Commission for Health Improvement (CHI) investigation
found examples of abuse including inappropriate use of restraint
techniques, unexplained bruising and a patient suffering a scald.
Other allegations that were not being investigated by CHI because
they were the subject of a police inquiry included restricting
food, hitting patients and using intimidating language. This report
highlights the lack of protection for vulnerable older people
across health and social care. The risk factors for institutional
abuse highlighted by CHI included low staffing levels, little
staff development, poor supervision and a closed, inward looking
culture.
12. As well as very severe abuse, people
with dementia can suffer from abuse in the more subtle form of
a disregard for their needs and denying them things that would
bring pleasure. This is related to people not understanding that
people with dementia are still individual's with their own wants
and needs. Care staff need to spend time finding out a person's
likes and dislikes and working to maintain and enhance their quality
of life. A letter from a carer illustrates how providing basic
needs and simple pleasures is a low priority at some care homes:
"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 cake—but the home owner said
cake was too expensive."
13. Over-prescription of neuroleptics is
a common form of physical abuse. They are often prescribed to
sedate people with dementia in care homes and hospitals. Although
in some cases these anti-psychotic drugs can be helpful in reducing
symptoms such as hallucinations, the levels of prescribing far
exceed the numbers of older people who would benefit from these
drugs. They are prescribed as a management tool for behaviour
such as wandering, agitation and uncooperativeness that could
be dealt with by other methods if staff were well trained in dealing
with people with dementia. Although the negative consequences
of neuroleptics are well documented the prescription rates continues
to increase. Furthermore, their use is not monitored meaning that
elderly people in care homes are being kept in a state of sedation
for no medical reason. The following is one woman's experience
of the results of neuroleptics, reported in a telephone call to
the Society:
"My mother turned from a gentle happy old
lady into a non-entity. They killed her with these drugs."
14. A recent report[4]
found that there has been a 6.2% increase in community prescriptions
of anti-psychotic drugs between 1999 and 2002, representing a
rise of 129,000 prescriptions in four years. Two thirds of GP
practices have missed the April 2002 NSF for Older People target
of annual and six monthly reviews of medication for people over
65.
15. The introduction of Draft Mental Incapacity
Bill would help to prevent elder abuse. It confirms the importance
of presuming each individual has capacity until proven otherwise
and supports a person with dementia to make as many of their own
decisions as possible. This is a very positive step which will
help to empower the person with dementia.
16. There is currently no duty to consult
carers about decisions relating to the health care of a person
who has lost capacity. This means that thousands of people who
are unable to make decisions are open to exploitation. Professionals
are often unsure about what the law allows them to do to ensure
the patient gets the necessary treatment. As a result, they are
at risk of being accused of malpractice; while patients are vulnerable
to abuse. The draft Bill proposes a general authority to act,
which ensures that both carers and professionals must act in the
person who has lost capacity's best interests. This requires some
clarification but should, in principle, provide some protection
for people with dementia.
17. The draft Bill also includes advance
directive which 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. It
gives people assurance that their wishes will be respected.
18. The Bill also proposes 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. This introduces a degree of protection as
well as reassurance that the person with dementia's wishes will
be followed as far as is possible. 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. 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.
19. The Alzheimer's Society has been campaigning
to ensure that the Bill is in the Queen's speech on 26 November
2003 and that it is passed and enacted without delay. New legislation
will not only protect people who may not have capacity, it will
also help protect professionals in carrying out their duties and
will have a major impact on carers' lives.
20. The Society believes that the current
situation is inadequate and ineffective in respect of protecting
people with dementia from exploitation and neglect. Public law
protection is needed.
21. The Society is campaigning for:
Prevention of abuse by care workers through:
— proper supervision and monitoring
for care workers;
— the careful selection and training
of staff;
— the introduction of better regulation
and inspection of care services—domiciliary, day and residential.
Prevention of abuse by carers through:
— adequate provision of respite
care breaks, day care and home services;
— financial security for carers;
— ongoing and accurate support
and information about dementia.
An end to the over prescription of neuroleptics
through:
— better medical supervision and
regular reviews for people with dementia, particularly those living
in residential or institutional care;
— clearer guidelines on the use
of neuroleptics, many people are subject to excessive and inappropriate
medication;
— carers to be consulted over the
use of medication. In an Alzheimer's Society survey (1997), over
half of all carers said that they were not consulted on the use
of drugs;
— appropriate prescription of neuroleptics
to ensure that they are intended to be of primary benefit for
the people with dementia.
Better protection and legal safeguards for people
detained informally in care homes and in hospitals.
The introduction of mental incapacity legislation.
November 2003
3 Ballard C, Fossey J et al (2001) Quality
of care in private sector and NHS facilities for people with dementia:
cross sectional study. British Medical Journal 323:426-7. Back
4
Paul Burstow (2003) Keep Taking the Medicine 2. Liberal
Democrats. Back
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