All About

Dementia
A booklet for those wanting to
know more about dementia
By Dr Sophie Zeman, Scientific
Officer at the Mental Health
Foundation
Published by
The Mental Health Foundation
UK Office
83 Victoria Street
London SW1H 0HW
Tel: 020 7802 0300
Fax: 020 7802 0301
Scotland Office
24 George Square
Glasgow G2 1EG
Tel: 0141 572 0125
Fax: 0141 572 0246
E-mail: mhf@mhf.org.uk
Website: www.mentalhealth.org.uk
This booklet is for those wanting to
know more about dementia and
Alzheimer’s disease. It defines
dementia in its various forms, explains
about causes, treatment and care and
recommends other reading and
sources of help. The information in the
main text is accessible and
straightforward, while more detailed
scientific information is given in boxes.
We realise that you may have this
leaflet because you are looking after
someone who has dementia. Some of
the sections may be distressing, but
remember that not all the problems
described here will be experienced by
everyone who has dementia. Also, do
get in touch with the organisations
listed at the end if you would like more
information. Local groups, such as
those run by the Alzheimer’s Disease
Society or your local social services
may be useful.

Registered Charity No: 801130

© 1997, 1999 The Mental Health

Foundation

Cartoons drawn by
Simon Whiteman
© The Mental Health Foundation

Price £1.00
What is dementia?
Dementia is a gradual decline in mental ability: memory,
thinking, problem-solving, concentrating and perception.
It has many forms, and often we do not know what causes it,
although as described (see “What causes dementia?”) we have
some ideas. There are other problems sometimes associated
with dementia which can often be successfully treated. These
include things like depression, sleep problems, aggression,
inappropriate sexual behaviour and incontinence.

What is the difference between

dementia and Alzheimer’s disease -
and how common are they?
Alzheimer’s disease is an illness of which the main symptom
is dementia, and it accounts for about 60% of the cases of
dementia diagnosed. It was named after Alois Alzheimer,

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 a German doctor, who first described it, in 1907. Alzheimer’s
disease cannot be diagnosed with total certainty during
someone’s lifetime. It is characterized by damage (“plaques
and tangles”) seen in and around brain cells when these are
examined at a post-mortem.

Other forms of dementia differ in terms of their symptoms,

causes and the precise changes in the brain (See “In what
other diseases as well as Alzheimer’s does dementia occur?”).

Dementia becomes more common as people age. Only about

one person in a 1,000 below 65 will develop it, but about three
in a 100 of those over 65 and between 10 and 15 in 100 of
those over 80 will be affected.

People with all forms of dementia differ in terms of which signs

and symptoms they have and the speed and extent to which
their illnesses progress - problems vary, even day-to day. The
information in this booklet is intended as a general guide - not
all the problems will be relevant to everyone. Despite this,
those with all types of dementia are likely to need similar care
and support and hence this booklet is relevant to the range of
diagnoses.

What causes dementia?

Dementia occurs as a result of death of cells or damage in parts
of the brain that deal with our thought processes. This may follow
other problems like lack of blood and therefore oxygen supply to
these brain areas, head injury, pressure (such as from a tumour)
or infection (such as in AIDS).

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 In some cases, therefore, we can identify what is likely to be
causing dementia, and indeed treat the problem. In others - those
with Alzheimer’s disease, for example - we do not know why
brain cells become “sick”, although this is the focus of intense
research (See “What research is going on into dementia?”).

After Alzheimer’s disease, the second most common type is

vascular dementia, which occurs as a result of lack of blood and
oxygen to the brain in a series of tiny “strokes”. Other types of
dementia are rarer, and may be due to Lewy body disease, Pick’s
disease, Huntington’s disease or chorea, Creutzfeld Jakob
disease (CJD) the human equivalent of “mad cow disease”,
dementia as part of a neurological (brain) illness such as
Parkinson’s, a brain tumour, fluid build up (hydrocephalus) or
following a long period of excessive alcohol intake. These last
three causes are to some extent treatable, as is the dementia that
may result from causes such as vitamin or hormone deficiency or
syphilis. These possibilities should always be investigated and the
Alzheimer’s Disease Society Information Sheet “Other Forms of
Dementia” is very helpful. See also following sections and Boxes
1 & 2.

In what other diseases as well as

Alzheimer’s does dementia occur?
The second most common cause of dementia after Alzheimer’s
disease is vascular dementia. “Multi-infarct” dementia is
the most common sort, in which cells in certain regions of the
brain die because the blood supply to them is poor. Risk factors
for this are the same as those for stroke (See “Can anything
slow down dementia?”). Dementia progresses gradually -
characteristically capacity for learning, memory, speech and
language decreases, and people may have more insight into

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their condition than do those with Alzheimer’s disease. Other
distinctive features may include marked emotional swings,
night time confusion, fits like those of epilepsy, and partial or
total paralysis of a limb.

Another characteristic form of dementia is related to the

presence of “Lewy bodies” - tiny spherical structures found
inside brain cells, which may cause them to die. About a
quarter of people with Alzheimer’s disease are found to have
Lewy bodies in their brain cells when these are examined after
death. They are also found in brain cells affected by Parkinson’s
disease (PD), in which the ability to control movement is
impaired. Researchers disagree as to whether diffuse Lewy
body disease is a distinct condition, or a variant of Alzheimer’s
disease or PD, and indeed dementia linked to the presence of
Lewy bodies is known by many names. Symptoms vary, and
may be indistinguishable from those of Alzheimer’s disease, or
more mild in the early stages. Movement disorders like those
of PD may occur in parallel with dementia, and the severity of
dementia, confusion and hallucinations that some people
experience may be quite variable, even from hour to hour.

The main difference between Pick’s disease and Alzheimer’s

disease is that, in the early stages at least, damage occurs in
different brain areas. That most commonly first affected in
Pick’s disease is the front, and dementias of this origin are thus
sometimes referred to as “frontal lobe dementia”. Changes
in personality, impaired judgement, lack of inhibition, reduced
speech and obsessional behaviour may be early signs, and if
the disease includes cell death in the brain’s temporal lobes,
prominent signs include memory loss, difficulties with object
recognition and changes in eating habits - gorging, and often
craving sweet food. The age of onset is most commonly
between 40 and 65 years.

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Dementia and younger people
There are two distinct ways in which younger people may
experience dementia - through witnessing it in elderly relatives,
or, extremely rarely, developing it themselves. The vast majority
of young people affected by dementia see it develop in
grandparents or other elderly relatives. Explaining the illness to
them can be very difficult, and the Alzheimer’s Disease Society
has produced leaflets on this.

A distinction used to be made between dementia occurring in

those above 60 and those under, with the term “pre-senile
dementia” sometimes applied to the latter. Box 1 outlines the
main dementias that people under 60 may suffer.

Treatable causes of dementia

It is important to rule out conditions which could be treated
to reverse or stop progression of dementia. The following
categories summarise the main dementias of this sort:

Head-injury related:
Internal bleeding after a head injury can lead to a clot that
presses on the brain and in turn causes dementia. Such
sub-dural haematomas can often be surgically removed.

Another problem that can occur after head injury is a build up of

cerebrospinal fluid (CSF), which normally protects and cushions
the brain. Internal bleeding and infections can also cause this
hydrocephalus which may be noticed first as problems with
walking and incontinence. Again, surgical treatment can help.

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 Box 1: Dementias affecting those under 60

While Alzheimer’s disease has been known to affect people in their 20’s, there
are other dementias more associated with this age group, although even these
are rare. Dementia with treatable causes (See “Treatable causes of dementia”)
can occur in the young and should be ruled out if a young person develops any of
the signs. Indeed, should a young person develop these, the possibility that they
are a usually temporary effect resulting from illegal drug use should also be
looked into.

A small number of people with the HIV virus that causes AIDS develop dementia,
as a result of a direct effect of the virus on the brain, or infections or tumours that
can develop after the weakening of the immune system that AIDS causes. More
information on this can be obtained from the Terence Higgins Trust (see “Where
to get further advice”)

Despite a lot of publicity, Creutzfeld Jakob disease (CJD), the form of dementia
that has been linked to eating infected beef, is extremely rare, occurring in about
one in a million people in the UK. The link to eating infected beef has only been
made in the form that affects young people - no such link has been found in the
most usual form of CJD that develops in late middle age, progresses rapidly and
causes death within about a year. The form that occurs in young people can go on
longer and has early signs similar to those of AD. Disturbance of mood is
common and people affected may also become unsteady on their feet and have
spasms or jerkiness in their hands and feet.

Huntington’s disease or Huntington’s chorea is a rare dementia that occurs in

parallel with problems controlling body movements and usually begins in the
thirties or forties, with either set of symptoms occurring first. Memory loss
progresses to severe dementia, and anxiety and depression may also occur.
Involuntary twitching and muscle spasms, which may be controllable by drugs,
are the physical problems which give the disease the name chorea. Huntington’s
disease usually goes on longer than Alzheimer’s disease, sometimes up to 25
years before death, and nursing care is almost always needed at later stages.
Some of the debate about whether people should be tested to see if they carry
the genes for certain psychiatric disorders has focused on Huntington’s disease
because those who develop it will generally not do so until after their child-
bearing years. Those at risk, where people in their family have the disease, may
be offered genetic counselling and the test before they make a decision about
starting a family. That said, it is important to respect someone’s wishes if they
prefer not to obtain this information.

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Dietary:
While long-term alcohol abuse can itself damage the brain and
cause dementia, people who abuse alcohol may also neglect
their food intake and become deficient in certain vitamins and
minerals. Improving diet and stopping drinking can help.
Korsakoff’s syndrome, often manifest as memory loss, can
occur after prolonged heavy drinking due to vitamin B1
(thiamine) deficiency.

Vitamin deficiency alone, especially lack of B1, 3, 6 & 12 can

cause dementia-like symptoms. A simple blood test and
vitamin supplements can help.

Dementia linked to other illnesses:

An underactive thyroid gland (hypothyroidism) can lead to
dementia which may be reversible by replacing thyroid
hormone (thyroxine). The chances of this working well are
increased if the problem is recognised within two years.

Other treatable hormone problems may lead to dementia, as

can conditions such as systemic lupus erythematosus (SLE),
syphilis and brain tumours. Reduction of the blood supply to the
brain due to cardiac, respiratory failure or anaemia may also be
to some extent treatable. Finally, it is worth remembering that a
dementia-like illness can occur in elderly people who are
severly depressed, and this possibility should always be
investigated.

Is dementia inherited?
Most studies looking into whether dementia runs in the family
have been on Alzheimer’s disease, and most cases do not.
Those that do, tend to begin quite young - if at least three

7
 people from one side of your
family have developed
Alzheimer’s disease between
35 and 60, there may be a
genetic predisposition to it.
Although it is by no means
inevitable that you will
develop it, you may want to
ask your GP to refer you to a
genetic counsellor or a
specialist dementia clinic.

Box 2 explains in a little more depth what we know about the

genetic link in Alzheimer’s disease. That most research to date
has focused on Alzheimer’s disease, reflects how common it is
compared with the other dementias.

Box 2: Genetics and dementia

Finding out more about the genetic forms of Alzheimer’s disease may help us to
better understand the disease in general. Genes, located on chromosomes,
instruct the cells of the body to make proteins and thereby govern many aspects
of their function. Finding out which of these genes and hence proteins go wrong
in Alzheimer’s disease in the small number of cases that are in part inherited,
should help us work towards prevention, treatment and cure for all types, as the
fundamental problems are likely to be similar whether or not the disease is
inherited.

One of the genes that seems to be important in causing inherited Alzheimer’s

disease is that for a protein called amyloid, which accumulates in the brain and
which may prevent chemical messengers (neurotransmitters) which usually carry
messages from one brain cell to others from doing their job. This might help
explain why people with Down’s syndrome (a mental handicap or learning

8
disability where those affected have an extra copy of chromosome 21, where the
“code” for (instruction to make) amyloid is found) have an increased risk of
developing Alzheimer’s disease.

It is not only abnormalities in the genes for amyloid that may be responsible for
inherited Alzheimer’s disease. For example, we know that some families have
defective genes on chromosomes 1 and 14, and that these genes code for
proteins involved in the processing of amyloid in the brain.

Finally, a lot of research has focused on a gene which makes the protein
apolipoprotein E (ApoE), which is made in 3 forms (E2-4). We’re not sure what
ApoE does in the brain, but in the rest of the body it is involved in transport of
fats. Most people have two copies of the ApoE3 subtype, which has no effect on
their risk of developing Alzheimer’s disease, while those with ApoE2 may have
reduced risk. ApoE4 is uncommon, but does increase the risk of developing
Alzheimer’s disease. Given that we inherit one ApoE gene from each parent,
those most at risk are those with two of the E4 forms and those with one or two
have a graded risk.

ApoE4 only increases risk of Alzheimer’s disease, and does not mean it is
inevitable. The impact of this changes as we get older. At age 50, the risk is 1 in
1,000, and ApoE4 will double this risk to 2 in 1,000. However, at 90, the usual
incidence is about 1 in 2, and it might be expected that those with ApoE4 would
therefore inevitably get Alzheimer’s disease at this age. This is not the case, and
is a good example of how there must be either an environmental factor which
interacts with ApoE4 to bring about the disease or another as yet unidentified
gene which, along with ApoE4, also affects risk.

The non-Alzheimer’s disease dementias described earlier (see “In what other
diseases as well as Alzheimer’s does dementia occur?”) also have genetic links.
While vascular dementia, like Alzheimer’s disease, seems to occur as a result of
genetic and environmental interaction, Pick’s disease may more often run in
families and we may be getting close to finding out what gene(s) is/are involved.
The child of someone with Huntington’s disease has a 1 in 2 chance of
developing it, and can have a test to find out if they are at risk (See Box 1).

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How is dementia treated?
Whenever dementia is diagnosed, the possibility that it is
treatable as described earlier should be considered. Sadly,
Alzheimer’s disease and the other dementias of this sort
cannot be cured but there are things that can be done both
to help directly with the symptoms and which may also slow
disease progression.

Drug treatment
There are so many people longing for a cure or alleviation for
dementia that “new treatments” are sometimes reported
which turn out to be unavailable or at an early stage in
development or evaluation.

Although currently available drugs can’t cure dementia, they

can be useful for treating some of the problems associated
with it (as described in “What is dementia?”) including
depression. Your doctor should be able to advise you on this.

It is important to review regularly the drugs taken by a person

with dementia, and indeed to check that none of those being
taken when the first diagnosis is made is contributing to or
causing dementia. Continuing medication for a physical health
problem existent before the dementia may be needed, or
people with dementia can develop other unrelated illnesses
that require treatment. However, some drugs can worsen
confusion, although the doctor may be able to adjust
medication to minimize this. Sedatives are especially
problematic as they can worsen confusion. There is some
concern that they may be over-used, especially in care homes.
Talk to the home’s own doctor if concerned.

Major tranquilisers like Melleril or Haldol are quite commonly

used in dementia, especially when there are particular

10
 problems with disturbed thoughts and seeing, hearing or
smelling things that aren’t there. These drugs can be useful in
some patients, but sometimes only for a short time - dementias
are progressive problems and drugs useful at one point may
cease to be so later. These drugs may also just replace one
set of symptoms with others, such as apathy. People whose
dementia occurs as a result of Lewy Body disease (see “In
what other diseases as well as Alzheimer’s does dementia
occur?”) may react badly to major tranquilisers and their use
should generally be avoided.

There is much interest in a drug called Aricept or donepezil which

was licensed for use in the UK in March 1997. Another in this
category but not available in the UK is Cognex or tacrine - problems
it may cause with the liver stopped it getting a UK licence.

Such drugs are not cures for Alzheimer’s disease, nor do they
appear to stop its progression, although we’ll know more about
this when they have been in use for longer. They seem to be
most effective given in the early stages of Alzheimer’s disease
when dementia is relatively mild, which is one reason why
seeing your doctor and getting an early diagnosis may be
beneficial. Side effects (which may include nausea, vomiting,
diarrhoea, insomnia or sleepiness), need to be balanced against
any improvement in quality of life. However, the side-effects
tend to reduce after a few weeks. Effectiveness of these drugs
is not affected by the patients age, sex or race.

Non-drug treatment for dementia

The maintenance of good general health is important, and there
are things that can be done to promote and preserve mental
ability, as described in “Can anything slow down dementia?”.
As described above, there may also be steps that can be taken
in rare cases where dementia is associated with a treatable
condition. As yet, there is no surgery with proven benefit in

11
dementia, although research is looking into the possibility that
brain cell transplants might be useful, as they may be in some
cases of Parkinson’s disease.

Some people with dementia are helped by “psychological”

techniques such as reminiscence therapy, in which they are
encouraged to recall events from the past, and from
complementary approaches such as homeopathy or
aromatherapy. You can find out more about these in
Alzheimer’s at your Fingertips and from the Institute for
Complementary Medicine (See “Where to get further advice”
and “Further reading”).

Finally, people often ask whether it is helpful to keep the brain

“exercised”. It certainly seems that gentle encouragement to
use the brain and keeping the environment quite stimulating is
a good idea. But don’t overwhelm people with demands that
may only frustrate if they cannot be met.

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What are memory clinics?
Memory clinics vary, but in general they specialise in testing
and assessment of memory and other abilities. This is
necessary to make as good a diagnosis as possible about the
type of dementia that the individual has. Some memory clinics
are also involved in testing new drugs, and may offer
participation in drug trials (see Box 3).

Box 3: How are drugs for dementia tested?

After trials suggest that a drug may be effective at treating any condition, much
work remains to make sure that it really is effective and safe, and at what dose it
is most usefully given. This process may involve randomised controlled trials
(RCTs) in which groups of patients are divided and some given the drug while
others receive an inactive tablet (placebo) or the best drug currently available for
the problem that they have.

After an appropriate period of time, all patients are re-assessed to see whether
those taking the new drug really have benefitted. It can be extremely frustrating
to be involved in a trial and not know if you or a loved one are in fact receiving the
inactive placebo. However, people involved in such trials are always asked to give
consent and they are really the only way that, in the long term, effective and
improved treatments can be found and tested.

Can anything slow down dementia?

Do we know how to preserve our cognitive function - for
example our memory, and if we begin to develop problems that
might herald the onset of dementia, can we do anything to
slow down or stop this? Both questions are being intensively
researched and in general, factors that protect against stroke

13
are predicted to have value in preserving our cognitive function
by ensuring that the brain is well supplied with blood and
oxygen.

Similarly, while we do not know with certainty whether steps

can be taken to slow down or stop progression of Alzheimer’s
disease or the other dementias described, vascular dementia is
the exception, where risk factors are the same as those for
stroke. Hence drugs may be given (these may be as simple as
aspirin) to thin the blood, correct irregular heartbeat and in
some cases, surgery may be performed to remove deposits
that may be lining arteries and thereby decreasing blood flow.
Treating high blood pressure in people with vascular dementia
is a difficult balance, as a relatively high pressure is needed to
supply the brain with adequate blood and oxygen despite
reduced flow.

14
Scientists increasingly agree that Alzheimer’s disease probably
comes about when enough different types of damage,
combined in some cases with a certain genetic make-up,
accumulate. Such damage could result from head injuries or
reduced blood supply secondary to, for example, smoking or
infections. There would thus seem to be some things we can
do to try and reduce the amount of damage that occurs in the
first place.

As well as anticholinesterases (see Box 4) which may slow

progression of Alzheimer’s disease, the maintenance of good
general health is important, through such things as a well-
balanced diet. It also seems that when brain cells die, in
illnesses such as dementia, others are able in part to take over
their function. This “compensatory” ability of the brain is huge
at birth but declines with age. Drinking alcohol, smoking, head
injury and severe infections may further reduce the brain’s
“reserve” and trying to minimise this may be wise.

Researchers and doctors would of course like to identify drugs

that slow down the progress of dementia, rather than just to
replace neurotransmitters once brain cells have died. There is
some evidence that drugs like neurofen may do so, and as
these drugs have anti-inflammatory properties this may suggest
that inflammation is in some way linked to the development of
dementia.

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 Box 4: How do Aricept and Tacrine work?

These drugs are anticholinesterases or cholinesterase inhibitors and they work by

stopping breakdown of acetylcholine (a neurotransmitter, which helps brain cells
communicate, and levels of which are reduced in Alzheimer’s disease) by another
brain chemical called acetylcholinesterase. People with Alzheimer’s disease have
reduced levels of acetylcholine (as well as other neurotransmitters); “deposits” in
and around cells, and plaques and tangles, may further reduce its efficiency by
stopping enough of it getting from one cell to another. The actual numbers of cells
sending and receiving acetylcholine are also reduced. Together, these factors may
underlie memory problems. Aricept thus may boost acetycholine levels and help
with memory problems to some degree and in some people.

Drugs that may become available in the foreseeable future include Exelon,
metrifonate and galanthamine, which all work in ways similar to Aricept. Future
developments are likely to include drugs which to some extent “copy”
acetylcholine or other neurotransmitters lost in Alzheimer’s disease, and act
directly on the cells that respond to them.

Is it best for people with dementia to

live at home, what support is
available, and who pays?
Some people with dementia remain living at home, alone or
with a spouse, child or other carer. There are ways to make
home as safe as possible, as detailed in the Alzheimer’s
Disease Society leaflet “Safe as Houses”. It seems obvious,
but it’s worth remembering, that safe, familiar environments
and consistent routines will help reduce confusion and may
also be useful in protecting against physical dangers such as
falls.

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It is often hard to make decisions about when staying at home
is no longer possible and to identify the best options of
residential care. It is important to remember how hard it can be
to look after someone with dementia and that the decision to
find alternatives need not be left until the carer really feels that
they can no longer cope. Many people with Alzheimer’s
disease or other dementias need the services offered by
residential or nursing homes at some stage.

While people with dementia are at home, they are entitled

to receive professional support under the “Care in the
Community” initiative. In general, ask the GP or hospital
specialist about medical or nursing support. If you want access
to other services such as home helps or meals on wheels, you
will undergo a “needs assessment” from your local social
services (contact the local Council).

Social services are responsible for providing a range of help, but

whether this is free or indeed available depends on two things -
what the needs assessment identifies is required, and where you
live. Local authorities do not have a legal obligation to provide care
in the community if this would cost more than residential care.

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The needs assessment is usually done by a social worker or
occupational therapist and takes into account the views’ of the
GP and carer(s), any professionals who have been involved and
the person with dementia themselves - although the
questionnaire form that they are given may need to be filled
in by their closest carer if they can’t do it themselves. Once
assessed, social services will discuss with carers what support
the person with dementia is entitled to, and will appoint a care
manager to co-ordinate the range of services that may be
approved, through a care plan. These may change as the
disease progresses and indeed the care manager will continue
to be involved if residential care is needed (See “Residential
care for those with dementia - when and where?).

The services which people with dementia living at home may

be offered range from home helps to assist with daily life,
some forms of nursing care often through the district nurse,
to assistance from the community psychiatric nurse (CPN) who
will monitor patients and liaise with other supports such as
speech therapists and respite care (see “What is respite
care?”). Again, depending where you live, further day-to-day
home care is provided by social services or voluntary groups
such as the Association of Crossroads Care Attendants
Schemes or private agencies, who should be members of the
UK Home Care Association.

A good relationship with the care manager can be extremely

useful, and if you disagree with any element of the care plan,
you should discuss it with them. The social services
department has a complaints procedure that you can use if you
cannot resolve differences of opinion.

Day centres can be very useful for those with dementia living
at home whose carer has to be out during the day. Run by local
health authorities, social services, voluntary organisations and
some nursing homes, often with transport to them provided,

18
 your GP, social services or organisations such as the
Alzheimer’s Disease Society and Age Concern will be able to
tell you more about what’s available in your area. Try not to
choose a day centre too far from home, as long journeys can
both tire and confuse those with dementia. Charges may be
made for transport and food.

Whether services provided under community care are free will

depend on income and savings, and the needs assessment will
look into this. Not all services are available in all areas and there
may be waiting lists. It can be incredibly frustrating trying to set
up a rota of help that makes both main carers and the person
with dementia feel confident that living at home is feasible. As
a basic minimum, if the needs assessment identifies that home
help, day centre places, meals-on-wheels and advice on aids in
the home are needed, these must be provided, regardless of
where you live.

Residential care for those with

dementia - when and where?
People with dementia are rarely looked after in hospital unless
they have a specialist medical need. The two main types of
residential care are “residential” and “nursing” homes, the
difference being the level of specialist care provided.
Residential homes provide meals and activities and help
residents with washing, dressing, baths etc. People with
dementia who also have physical problems or whose behaviour
cannot be managed by non-professional staff will need the care
offered in a nursing home. Indeed, sometimes going straight
into a nursing home before these problems arise can avoid
having to move later if they do.

19
 When looking for the right home, visit, talk to the person in
charge, the staff, other residents and their families. Remember
location - it should be easily accessible to those who will want
to visit often, and think about the overall feel of the place - will
it make a “home”?

More detailed advice on homes can be obtained from Age

Concern, the Alzheimer’s Disease Society and Counsel and
Care. Furthermore, residential homes must be registered with
the local social services, and their registration and inspection
unit will also deal with any complaints that may arise. Your local
Health Authority has similar responsibilities for nursing homes.

What is respite care?

Respite care is a temporary period, a week or two, or
sometimes much shorter periods, when the person with
dementia stays in a hospital or care home or has an alternative
carer living with them. This gives the main carer a respite - a
holiday - from looking after them. People often feel guilty about
asking for respite support for their loved one, but caring is a full-
time job and no-one works without a holiday. Social services
have discretion about whether or not to charge for respite care.

GPs or hospital specialists can give advice about respite

arrangements in your area. Social services will assess the need
for respite and recommend where the person with dementia
might go or whether home respite is possible.

20
Who pays for residential care of
people with dementia?
As mentioned in the previous sections, charges may be made
for many of the services provided for those with dementia
living at home. These vary from region to region and will be
influenced by what the individual can afford. The regulations
about who pays for residential care constantly change, as does
the extent to which financial status - of a client or their spouse -
affects this. Your local Citizen’s Advice Bureau can advise.

In general, people’s income and savings are taken into account

when local authorities are deciding at what level they will
financially assist with costs. You may be able to make the
decision to use a private home and meet all the costs yourself,
but bear in mind that it may become necessary at some stage
to move to a less expensive home or one that social services
will subsidise. They will decide whether to do this on the basis
of a needs assessment (see “Is it best for people with
dementia to live at home, what support is available, and who
pays?”).

If people with dementia need time in hospital, they have a right

to refuse to be discharged if this means that they will go into
fee-paying residential care. Should this situation arise, an
assessment involving hospital staff, GP, social services and the
person with dementia and their carer(s) must be carried out,
and the hospital consultant will make the final decision about
whether hospital care can continue. This decision can be
appealed against, and again your Citizen’s Advice Bureau or
legal advice centre can tell you more about this procedure.

21
What help can I get as a carer of
someone with dementia?
The carer’s role can be extremely difficult. Whether your friend
or loved one is at home or in residential care, you may have
times when you manage well, and others when it all seems too
much to bear. Ensuring that you get regular holidays from
caring - you may not want to go away, but just need some time
to yourself - is important (See “What is respite care?”).

Make sure that you get as much help as you can from the other
people involved in care, from the GP and other professionals to
other carers such as yourself, who you may be able to contact
via your local branch of the Alzheimer’s Disease Society. When
you have appointments to see doctors or others involved in
care, it can be helpful to make a list of things you want to ask
them about as they occur, and take this with you when you
meet.

22
 The Mental Health Foundation has a free booklet called
“Because You Care” which is a guide for carers, to help them
deal with difficult behaviour in those with dementia.
Organisations listed in “Where to get further advice” also have
useful publications.

What research is going on into

dementia?
Dementia is overwhelmingly a problem associated with ageing.
With a growing elderly population, pressure to find causes,
preventions, treatments and cures is immense, not to mention
ways to alleviate the difficulties faced by carers. There is also
increasing recognition that people with dementia themselves
may be able to be better understood and thus their views of
the care they are receiving, and what their wishes are, be
accessed.

The Alzheimer’s Disease Society and Alzheimer’s Scotland

produce regular updates on dementia research both in the UK
and abroad, and you will also find information on the Internet.
Be careful about relying on media reports, which may not
always be accurate and may exaggerate the nature of new
findings. For example, in 1986, the whole world seemed
suddenly convinced that aluminium was causing Alzheimer’s
disease, following reports that aluminium was found in the
brain deposits that occur, but this is now largely thought to
be an unlikely cause.

To find a cure, it will be necessary to identify more accurately

the causes of dementia, and much work is focusing on this.
We may get clues from emerging drugs which seem to prolong
good mental function in those with dementia, and which some

23
studies suggest may also slow progress of the condition. It will
be interesting to see whether other countries’ strategies, such
as the widespread use in continental Europe of drugs which
widen blood vessels (vasodilators), are shown to be effective
and thus influence practice in the UK.

Much future research will undoubtedly concentrate on what

genetics can tell us about dementia. It is now possible to have
a test for the rare inherited form of Alzheimer’s disease and it
may become possible in the future to repair or replace genes
damaged and implicated in this and other dementias.

Finally, it is clearly very important to find ways that those caring

for people with dementia can be supported through what may
be extremely difficult times. Research has been and is being
carried out into what supports carers find most useful and, to
date, day care and respite help (see “What is respite care?”)
have proved to be highly effective, and efficient, uses of
healthcare resources. It is clearly vital that the value of support
services be accurately assessed if calls for the continuing
provision of those that are helpful are to be heeded.

24
Where to get further advice
*Age Concern England The Alzheimer’s Society is the
Astral House leading care and research charity
1268 London Road for those with dementia
London SW16 4ER
Alzheimer Scotland - Action on
Tel: 020 8765 7200
Dementia
*Age Concern Northern Ireland 22 Drumsheugh Gardens
3 Lower Crescent Edingurgh EH3 7RN
Belfast BT7 1NR Tel: 0131 243 1453
Tel: 028 9024 5729 24 hour Freephone helpline:
0808 808 3000
*Age Concern Scotland
113 Rose Street Help for people with dementia,
Edinburgh their carers and families.
EH2 3DT
Crossroads Association
Tel: 0131 220 3345
10 Regent Place
Age Concern provides Rugby
comprehensive information and Warwickshire
advice relating to older people. CV21 2PN
Tel: 0845 450 0350
*Alzheimer’s Society &
CJD Support Network Regional centres throughout the
Gordon House UK providing practical support
10 Greencoat Place and help for carers
London SW1P 1PH
Carers Association of Ireland
Tel: 020 7306 0606
St Mary’s Community Centre
*Alzheimer’s Society Richmond Hill
(Northern Ireland) Dublin 6 Ireland
403 Lisburn Road Tel: 01-497 4498
Belfast BT9 7EW (From UK): 00 3531-497 4498
Tel: 028 9066 4100
*Carers National Association
*Alzheimer’s Society 20-25 Glasshouse Yard
(Welsh Development Office) London EC1A 4JS
Tonna Hospital Tel: 020 7490 8818
Neath Helpline: 0808 808 7777
West Glamorgan SA11 3LX
Campaigns for carers’ rights and
Tel: 01639 641938
provides a telephone helpline.

25
*Counsel and Care natural therapies and ensures
Twyman House high standards of care
16 Bonny Street
*MIND (National Association of
London NW1 9PG
Mental Health)
Tel: 020 7241 8555
Granta House
Advice Line: 0845 300 7585
15-19 Broadway
Advice and information on home Stratford, London E15 4BQ
and residential care for older Tel: 020 8519 2122
people, carers and professionals Info. line: 9.15-4.45
Mon, Weds, Thurs,Fri; 2-4.45
*CRUSE: Bereavement Care Tues: 020 8522 1728 /
Cruse House 08457 660163
126 Sheen Road
Richmond Works for all those in emotional
Surrey TW9 1UR distress, their carers, families,
Tel: 020 8939 9530 friends, students and
Helpline: 0870 167 1677 professionals

*National Self-Help Support

*CRUSE: Bereavement Care Networks
Northern Ireland c/o National Self-Help Support
50 University Street Centre
Belfast BT7 1HB NCVO
Tel: 028 9024 1221 Regents Wharf
8 All Saints Street
CRUSE provides bereavement London N1 9RL
counselling, support, help and Tel: 020 7713 6161
advice
Helps those wanting to set up
*Huntington’s Disease support and self-help groups and
Association maintains a database of them
108 Battersea High Street
London SW11 3HP *The Mental Health Foundation
Tel: 020 7223 7000 UK Office
National helpline: 01924-280062 83 Victoria Street
London SW1H 0HW
Support and help for those Tel: 020 7802 0300
affected by Huntington’s Disease Fax: 020 7802 0301
Institute for Complementary Scotland Office
Medicine 24 George Square
15 Tavern Quay Glasgow G2 1EG
London SE16 1TX Tel: 0141 572 0125
Tel: 020 7237 5165 Fax: 0141 572 0246
Provides information about

26
This booklet has been produced
by the Mental Health Foundation
(MHF) the major UK charity
concerned with all aspects of
mental health, including mental
illness and learning disabilities
(mental handicap).

The Samaritans
UK-wide helpline: 08457 909090

24 hour helpline offering support

to those in crisis or need

*Terence Higgins Trust

52-54 Grays Inn Road
London WC1X 8JU
Tel: 020 7831 0330
Helpline:
0845 1221 200

Provides understanding about

HIV and AIDS and practical
support for those affected

* These organisations produce

leaflets etc. that may be helpful.
Their publications are not listed
individually.

27
Further reading
The Alzheimer’s Disease Society produces excellent Information
Sheets and other material on a range of issues related to Alzheimer’s
disease and other dementia.

Alzheimer’s at your Fingertips

Harry Cayton, Dr Nori Graham & Dr James Warner, Class Publishing,
1997. £11.95.
An excellent and comprehensive guide - answering commonly asked
questions about all types of dementia.

Because You Care - A guide to help carers cope with difficult

behaviour in people with dementia.
Dr Katy Hinchcliffe & Dr Gill Livingstone for the Mental Health
Foundation, 1994. Free.
A practical guide based on experience of working with dementia
sufferers and their carers

Opening the Mind - New frontiers in Alzheimer’s research.

Georgina Ferry for the Alzheimer’s Disease Society, 1996. £7.50
An interesting and comprehensive guide to Alzheimer’s disease
research for non-scientists.

Contact. A directory for mental health.

Dept. of Health and the BBC, 1995; and “Update”, 1996. Free.

A full list of Mental Health Foundation publications can be obtained

from our Publications Office. Tel: 020 7802 0304.

28
As the UK’s only charity concerned with both mental health and
learning disabilities, the Mental Health Foundation plays a vital
role in pioneering new approaches to prevention, treatment and
care. The Foundation’s work includes: allocating grants for
research and community projects, contributing to public
debate, educating and influencing policy makers and health
care professionals.