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The Royal College of Psychiatrists Improving the lives of people with mental illness

Partners in Care

Alzheimer's disease and other dementias

A carer writes about his experience of looking after his wife with Alzheimer's and some solutions to improving her care


Introduction

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 the disorder.

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 dementias

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 places
  • changes in mood, behaviour or personality
  • loss of interest in hobbies
  • loss of interest in hygiene and personal appearance
  • 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 knew
  • scared about admitting that there is a problem
  • exhausted by caring and ensuring that the person is safe
  • impatient with the person’s changed behaviour
  • 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 you.

The general practitioner does the initial tests before referring the person to a specialist. The specialists that you are likely to come across are:

  • Neurologists
  • Geriatricians
  • General Adult Psychiatrists
  • Old Age Psychiatrists
  • Nurses or other members of the mental health team.

Questions to ask the doctor

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 What does the diagnosis mean?

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   Can you explain it in a way that I will understand?

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   Are there any treatments?
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 Are there other things we can do to help ourselves?

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   What can we expect in the near future and over time?

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   How often should I come and see you?

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   Do you have any written material on this disease? If not, who does?

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  Is there anything that we can change at home to make things easier or safer?

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   Are there any organisations or community services that can help?

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   Which health service worker is my main contact for guidance and advice?

Remember to arrange your next visit before you leave.

 

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

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 helpful suggestions.
  • Try to talk to other members of the mental health team, such as nurses.
  • Ring the Alzheimer’s Society helpline on 0300 222 11 22 or contact other organisations which have helped you before.                  

Don’t forget to look after yourself as well

  • Share your worries with friends or members of the family.
  • 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 good practice.

When doing an assessment, do you?

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Try to see the person with dementia and the carer separately, as well as seeing them together

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   Try to see them at home first

Do you allow yourself enough time to?

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 Listen, ask, listen

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   Obtain a life history

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   Leave time for questions and discussion

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   Explain how you arrived at the diagnosis

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   Talk about the prognosis

In the management of the illness, do you?

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 Discuss possible treatments

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  Talk about the possible side-effects of drugs

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  Spend time asking about the carer’s health– physical and emotional

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  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 available.
  • 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 as writing.

 

Further help

Carers' Trust

Carers Trust logoCarers 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.

Alzheimer’s Society

Helpline: 0300 222 11 22. The Society is dedicated to supporting people with dementia and their families and provides:

  • practical and emotional help such as helplines and support groups
  • information
  • training for carers and professionals
  • services such as respite care.

Dementia UK

Tel: 020 7697 4160. 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. They provide mental health nurses specialising in dementia care, called Admiral Nurses.

With grateful thanks to Alzheimer’s Disease International 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 Carers.

 

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.


© January 2014. Review date: January 2016. Royal College of Psychiatrists. This leaflet may be downloaded, printed out, photocopied and distributed free of charge as long as the Royal College of Psychiatrists is properly credited and no profit is gained from its use. Permission to reproduce it in any other way must be obtained permissions@rcpsych.ac.uk. The College does not allow reposting of its leaflets on other sites, but allows them to be linked to directly.

 

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For a catalogue of public education materials or copies of our leaflets contact: Leaflets Department, The Royal College of Psychiatrists, 21 Prescot Street, London E1 8BB. Telephone: 020 7235 2351 x 2552. 

Charity registration number (England and Wales) 228636 and in Scotland SC038369.

 

 

Please note that we are unable to offer advice on individual cases. Please see our FAQ for advice on getting help.

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