APPENDIX 3
Memorandum by the Alzheimer's Society
(D14)
1. THE ALZHEIMER'S
SOCIETY
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
provides information and education, support for carers, and quality
day and home care. It funds medical and scientific research and
campaigns for improved health and social services and greater
public understanding of dementia.
1.2 The Society has over 22,000 members
and operates through a partnership between some 250 branches and
support groups and the national organisation in England, Wales
and Northern Ireland. The Society brings together carers, family
members, health and social care professionals, researchers, scientists
and politicians through shared concern for people with dementia
and those who care for them.
1.3 Dementia is one of the most significant
health and social care challenges of the next century. 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
80 years of age in the UK. As the population ages so the number
of people with dementia will grow. While age is the most significant
risk factor, there are 17,000 people with dementia aged under
65 years of age in the UK.
1.4 The Society welcomes the Committee's
enquiry into the Government's strategy Modernising NHS Dentistry
and in particular the focus of the strategy on improving access.
Access to dental services is of major importance to people with
dementia and their carers, irrespective of residential setting.
Approximately one third of people with dementia in the UK live
in a care home/hospital, a third live with a relative or friend
and a third live in their own home on their own. The difficulties
that people with dementia and their carers face in accessing appropriate
dental services has been highlighted in the Alzheimer's Society
report Food For Thought published in July 2000 (copies enclosed
and available at www.alzheimers.org.uk).
2. THE IMPORTANCE
OF ORAL
HEALTH FOR
PEOPLE WITH
DEMENTIA
2.1 Food for Thought draws on nearly
4,000 questionnaire responses from people with dementia, their
carers and health professionals. The survey illustrates the high
degree of concern surrounding oral health:
— 80 per cent of carers said they were
worried about the problems a person with dementia has with eating
and drinking;
— oral health was the most frequently
cited factor associated with problems with eating or drinking;
— nearly half (47 per cent) of all
respondents felt that "oral hygiene or dentures" was
a problem for the person with dementia that they cared for.
2.2 The survey highlights the lack of professional
awareness surrounding good dental care for people with dementia,
including those with dentures. People with dementia represent
a vulnerable group—not only because they have particular
difficulties in accessing dental health services but because the
impact of dementia has important implications for oral health.
2.3 Where carers are able to access specialist
advice, it can be often invaluable:
"The dentist gave me great encouragement
to persist in trying to educate the staff about eating problems."
"The dentist suggested buying an electric
toothbrush. The care home staff said it was a great help—made
teeth cleaning easier and more effective. A good set of dentures
is easier to care for—much less trouble."
3. THE IMPACT
OF DEMENTIA
ON ORAL
HEALTH
3.1 Skilled/specialist support is required
to meet the complex physical and mental health needs that result
from the damage to the brain caused by Alzheimer's or another
form of dementia. Dementia will affect a person's memory, speech,
and their ability to carry out every task of daily living such
as brushing teeth. People with dementia become increasingly dependent
on the provision of quality care for the determination of their
quality of life and dentists have a key role to play.
3.2 Many people with dementia develop a
preference for sweet foods and drinks. This may be due to damage
to the hypothalamus. Moreover, people with dementia may forget
that they have eaten at all or eaten too much. Many carers expressed
concern over the possible adverse health effects from the consumption
of large amounts of sugary foods and drinks. This is clearly an
area that both carers and care staff want greater advice and support.
3.3 Healthy teeth and gums are vital for
chewing food. Moreover, some people with dementia simply forget
how to chew or swallow. Other people who are unable to swallow
may hoard food in the side of their mouths. Dentists have a key
role in maintaining good oral health and in minimising pain and
infection. Dementia may also mean that people forget how to brush
their teeth and may require assistance to do this.
3.4 People with dementia may experience
great difficulty in accessing appropriate dental services and
support. Not only will people with dementia have communication
problems that will make it harder for them to articulate a need
to see a dentist, such as pain relief, there may also be additional
problems associated with mobility that may make it hard to physically
attend a dentist's surgery;
"My mother still has all her own teeth and
I have had difficulties encouraging the care staff to ensure that
her teeth are cleaned several times daily. She has developed several
severe gum infections, which have been treated in what I feel
have been a haphazard way. At present, teeth care is quite good,
but is not consistent. She was not referred to a dentist until
we insisted, but the dentist said she was unable to help unless
my mother could be taken to the surgery. She has been bed-bound
for over two years now and this would be an impossibility."
Community dental teams should have responsibility
for ensuring that older people in care homes have access to dental
health services.
3.5 Difficulties with communication can
result in paid and other dental problems not being detected. A
person with dementia may become severely agitated or behave in
ways which appear to be aggressive or violent because they do
not understand what a dentist is doing. This will mean that there
may be additional problems in providing appropriate care. Several
carers noted that the person that they care for "refused
to be treated" and had to be anaesthetised. The use of anaesthetics
raises additional concerns because its impact can increase confusion.
Dentists should receive adequate training to ensure that the best
interests of people with dementia are upheld. Carers also highlighted
the problems that can arise surrounding a lack of capacity and
consent:
"My cousin is in a home. Her teeth are in
a shocking state. I cannot see how she can eat sufficiently. All
attempts to get her teeth and oral hygiene improved are frustrated
by her refusal to see a dentist. The home has given up."
"The dentist would not remove rotten/broken
tooth as patient could not give permission."
4. THE NEED
FOR SPECIALIST
KNOWLEDGE
4.1 Despite extremely high levels of concern,
less than half the carers had sought professional advice and help—with
only 8 per cent seeking help from a dentist. Few carers seemed
to be aware of the existence of community dental health services
and suggests that community teams need to do more to promote their
services to groups who are hard to reach.
4.2 Carers criticise both hospitals and
nursing homes for their inattention to the health of teeth and
gums of people with dementia. Dental health practitioners clearly
have an important role in raising awareness and in improving standards
of care for people with dementia. Moreover, many carers reported
that dentists do not have adequate knowledge or understanding
of dementia amongst dental health practitioners:
"The advice was hopeless. They all said
he should have false teeth. He would not know what to do with
them."
"No practical advice was given. The dentist
was "in-the-dark".
4.3 The difficulties that people with dementia
face in obtaining appropriate and quality dental services appear
to be exacerbated by living in a care home. Both carers and health
and social care professionals reported a high level of concern
over the way in which care home staff sought to maintain or improve
a person's oral health. There appears to be a lack of clinical
leadership in improving standards of dental care to older people
in residential/nursing care homes. Carers reported problems with
the care and fitting of false teeth as well as general oral hygiene:
"Nursing home staff did not ensure teeth
were cleaned—leading to mouth ulcers—leading to reluctance
to eat—hastening difficulties with swallowing."
"They broke his teeth in the washing machine
and had to be constantly hounded to get them replaced by the visiting
dentist. Meanwhile, they made no special provision for his eating,
this went on for six months."
"The nursing home have removed my mother's
false teeth with the excuse that she might swallow them. So they
feed her with scrambled egg sandwiches broken up and soaked in
soup! So, of course, she is losing interest in eating."
4.4 The difficulties that people with dementia
face in eating, drinking and taking medication as well as self-care
make them a priority group for specialist dental services. The
Alzheimer's Society therefore welcomes the strategy on NHS dentistry
but is concerned that there is no direct reference to older people,
or to people with dementia specifically.
January 2001
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