Alzheimer's disease and other
This leaflet is aimed at:
- the carers of people with Alzheimer’s disease
and other dementias who provide continuing help and support,
without payment, to a relative, partner or friend;
- the psychiatrists and members of the mental
health team involved in the care and treatment of the person with
It suggests ways of improving communication and
partnerships when the person has first been diagnosed with
Alzheimer’s disease or another dementia.
For the carer
About Alzheimer’s disease and other
Dementia is a term used to describe brain disorders
that have in common loss of brain function. This is usually
progressive and eventually severe. There are over 100 different
types of dementia. The most common are Alzheimer’s disease,
vascular dementia and Lewy body dementia. Dementia is not a normal
part of ageing, although it is more common in the elderly. About
20% of people over the age of 80 develop dementia.
Early changes in the person’s behaviour
As a carer you may notice:
- forgetfulness which affects daily living
- problems with common everyday tasks
- problems naming common objects
- getting lost easily, even in familiar
- changes in mood, behaviour or personality
- loss of interest in hobbies
- loss of interest in hygiene and personal
- anxiety about loss of memory.
Making a diagnosis of dementia
There is no single specific test that can show
whether someone has dementia. A diagnosis is made by talking to the
person and a close relative or friend to get an understanding of
the person’s history, as well considering all other possible causes
of the symptoms.
As the carer, you may feel:
- worried that you are losing the person you
- scared about admitting that there is a
- exhausted by caring and ensuring that the
person is safe
- impatient with the person’s changed
- ashamed about complaining or seeking help for
fear of betrayal of the person
- worried about the future and possible loss of
income and earnings
- worried about the long-term financial
responsibilities of caring for someone with a chronic illness.
Tips for Carers
In partnership with your doctor and members of the
mental health team
Good communication between a doctor, members of the
mental health team, a person with dementia and their carer is
important, but takes time and effort. Forming a positive, long-term
relationship with all the staff and doctors involved in the care of
the patient is especially important for a chronic condition such as
dementia. As dementia progresses, the needs of the person with
dementia and their carer will also change. Regular well prepared
visits to the doctor will help get the best care for both of
The general practitioner does the initial tests
before referring the person to a specialist. The specialists that
you are likely to come across are:
- General Adult Psychiatrists
- Old Age Psychiatrists
- Nurses or other members of the mental health
Questions to ask the doctor
What does the diagnosis mean?
Can you explain it in a way that I will
|| Are there any
Are there other things
we can do to help ourselves?
What can we expect in the near future and over
How often should I come and see you?
you have any written material on this disease? If not, who
there anything that we can change at home to make things easier or
there any organisations or community services that can
Which health service worker is my main contact for
guidance and advice?
Remember to arrange your next visit before you
The following advice may help you prepare for follow-up
visits to the doctor Before your visit:
- Keep track of changes in behaviour and
medication in a notebook, along with any concerns or questions
since you saw the doctor.
- Look at all the information you have collected
since your last visit and write down your top three concerns. This
will make sure that you remember to talk about the things that
matter. Your concerns may include questions about:
- changes in symptoms
- side-effects of medicines
- general health of the patient
- your own health
- help needed.
During your visit:
- If you do not understand something, ask
questions. Don’t be afraid to speak up.
- Take notes during the visit. At the end, look
over your notes and tell your doctor what you understood. This
gives your doctor a chance to correct any information or repeat
something that was missed.
Further tips for carers when dealing with
Doctors can be reluctant to discuss a person’s
diagnosis with the carer, as there is a duty of confidentiality
between a doctor and the patient. If the person is too ill to
understand what is happening, doctors will usually involve the
carer in discussions and decisions.
If the doctor is unwilling to involve you as a carer,
there are a number of things you can do:
- Ask the person you are caring for if you can
stay with them during the visit. If the person agrees, the doctor
is less likely to refuse.
- Talk with other carers as they may have some
- Try to talk to other members of the mental
health team, such as nurses.
- Ring the Alzheimer’s Society helpline on 0845
3000 336 or contact other organisations which have helped you
Don’t forget to look after yourself as
- Share your worries with friends or members of
- Don’t bottle your feelings up – there is
nothing wrong with a good cry.
- Try to keep in touch with friends – ask them to
pop in to see you.
- Go and see your own doctor if you cannot sleep,
are exhausted, anxious or depressed.
- Make sure that you find time for yourself and
do some simple exercise.
For the professional
As a professional working with people with dementia
and their carers, we hope that the following is a helpful guide to
When doing an assessment, do you?
Try to see the person with
dementia and the carer separately, as well as seeing them
Try to see them at home first
Do you allow yourself enough time to?
Obtain a life history
Leave time for questions and discussion
Explain how you arrived at the
Talk about the prognosis
In the management of the illness, do you?
about the possible side-effects of drugs
time asking about the carer’s health– physical and
Discuss how to meet the care needs of both the person with
dementia and the carer
Points to remember:
- Everyone needs some respite.
- Make it clear that you will be happy to talk to
other members of the family.
- Refer everyone you see to the Alzheimer’s
Society or other carers support organisations.
- Make it clear that you are always
- Give a telephone number where you can be
reached for further questions.
- Make sure that there is a named professional
person whom the family can contact at any time.
- When you write your letter to the GP, send
copies to the carer.
- Try to talk to the GP on the telephone as well
Carers Trust is a new charity which was formed by the merger of
The Princess Royal Trust for Carers and Crossroads Care in April
2012. Carers Trust works to improve support, services and
recognition for anyone living with the challenges of caring,
unpaid, for a family member or friend who is ill, frail, disabled
or has mental health or addiction problems. With our Network
Partners, we aim to ensure that information, advice and practical
support are available to all carers across the UK.
Tel: 020 7423 3500; Helpline: 0845 300 0336;
The Society is dedicated to supporting people with dementia and
their families and provides:
- practical and emotional help such as helplines
and support groups
- training for carers and professionals
- services such as respite care.
6 Camden High Street, London NW1 0JH
Tel: 0207 874 7200; email: firstname.lastname@example.org
The Trust supports people with dementia and their
carers, both in the community and in residential settings, by
providing one-to-one support, advice and counselling.
With grateful thanks to Alzheimer’s Disease
International (www.alz.co.uk) for permission to adapt the 2003
World Alzheimer’s day leaflet In perfect partnership and
to Dr Nori Graham and Harry Cayton for producing the leaflet.
This leaflet was produced as part of the
Partners in Care campaign, a joint initiative between the Royal
College of Psychiatrists and The Princess Royal Trust for
One of the aims of the Partners in Care campaign was to show
that if all
those involved in the care of people with mental health problems or
learning disabilities can work together, a trusting partnership can
be developed between carers, patients and professionals which will
be of benefit to all.
Original author: Dr Nori Graham
Carer input: The Princess Royal Trust for Carers
Editor: Dr Philip Timms, chair, Royal College of Psychiatrists'
Public Education Editorial Board.
© February 2011. Review date: February 2013.
Royal College of Psychiatrists. This leaflet may be
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For a catalogue of public education materials or copies of our
The Royal College of Psychiatrists
17 Belgrave Square, London SW1X 8PG. Tel: 020 7235 2351
Charity registration number (England and Wales) 228636 and in
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