my husband has dementia

by Sally Burningham

Just over three years ago Alan, now aged 84, was diagnosed with the multi-infarct type of vascular dementia by a specialist. 'This is where a series of very small strokes, occurring at intervals, cause a build-up of damage in the brain,' explains his wife Rachel, who is 77 and who cares for him at home.

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The first symptom of dementia that really struck Rachel was his loss of memory and, as she explained, it was more than the forgetfulness often associated with old age. 'He would often accuse me of keeping things from him that we had in fact discussed many times,' she recalls. 'We had had such a close and loving marriage that I was shocked to think he no longer trusted me. It took me some time to come to terms with the fact that this was all part of the dementia.'

trying to cope

Now, three years later, Alan seems to live for much of the time in the past. 'He firmly believes that he is still working and that his parents are alive', Rachel adds. 'Unfortunately this means he is constantly trying to leave our flat to make a visit or keep an imaginary appointment.' Rachel cannot let him go out on his own as he is likely to get lost and become distressed or mistake where he lives and knock on someone else's door.

She tries to do as much with him as she can. 'We still go for long walks and perhaps surprisingly to concerts and the cinema and close friends continue to visit at home.' Their three children and six grandchildren live quite a distance away. 'They come when they can and Alan is always pleased to see them, though I am not sure he always recognises them,' she admits.

Each day Rachel helps Alan with ordinary tasks such as washing, shaving and dressing. 'This can be surprisingly time-consuming and sometimes he needs a great deal of tactful persuasion,' she comments. 'Up till now, I have always found a way, but he is starting to become incontinent and I can see that I may have to think about residential care in the near future.' Although she dreads the actual time when this will become necessary she also realises that there may be a sense of relief as caring has become more and more demanding and exhausting.

services and support

Their local authority does provide good services. Alan goes to a day centre three days a week and on the other two days he is visited for four hours by a care attendant from the organisation Crossroads. 'I appreciate both but I particularly value the one-to-one attention that the Crossroads care attendants can give. They talk and listen, although what Alan says often makes very little sense. They also take my husband out for walks as he is very fit and still has a great deal of energy.'

The time while Alan is being cared for enables Rachel to recoup her own energy. 'My lifeline is my own history research and writing. If I can settle down to this for a couple of hours I feel really happy and refreshed,' she explains. Alan also has eight weeks of respite care spread throughout the year when he is looked after in a residential home. 'This gives me an opportunity to spend a weekend with one of my children and also have a few days entirely to myself at home. At first I felt sad to be doing things without him,' she reflects. 'But you have to be firm with yourself and be determined to enjoy as much as you can of what life still has to offer.'

Rachel attends a carers' group once a month and finds it helpful to talk things over with others who have had similar experiences. 'I would advise anyone who is a carer to try this out. Apart from giving me so much support it has also given me the satisfaction of being able to support others and the feeling that I am of some use,' she concludes.

help and info

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organisations

Age Concern England
1268 London Road
London SW16 4ER
Tel: 020 8765 7200
Info line: 0800 00 99 66 (every day 7am-7pm)
Website: www.ageconcern.org.uk
Aims to improve the quality of life of older people. Provides practical information and advice to older people and their families and factsheets on a range of issues that affect older people in the UK.

Age Concern Cymru (Wales)
Tel: 029 2043 1555
E-mail: enquiries@accyrnu.org.uk
Website: www.accymru.org.uk
Provides support, care and companionship to make the lives of older people in Wales better. The website is available in both English and Welsh.

Age Concern Northern Ireland
3 Lower Crescent
Belfast BT7 1NR
Tel: 028 9024 5729
Advice line: 02890 325 055 (Mon-Thurs 9.30am-1pm)
E-mail: info@ageconcernni.org
Website: www.ageconcernni.org

Age Concern Scotland
113 Rose Street
Edinburgh EH2 3DT
Tel: 0131 220 3345
Info line: 0800 00 99 66 (every day 7am-7pm)
E-mail: enquiries@acscot.org.uk
Website: www.ageconcernscotland.org.uk

Alzheimer Scotland and Action on Dementia
22 Drumsheugh Gardens
Edinburgh EH3 7RN
Helpline: 0808 808 3000 (24 hours)
E-mail: alzheimer@alzscot.org
Website: www.alzscot.org
Scotland's leading dementia charity, representing the concerns of people with dementia and their carers and families. Runs services throughout Scotland providing information and advice; day, evening and weekend care; home support; befriending; and carer support. Publishes leaflets, books and reports on all aspects of dementia and provides education and training for carers.

Alzheimer's Society
Gordon House
10 Greencoat Place
London SW1P 1PH
Helpline: 0845 3000 336 (Mon-Fri 8.30am-6.30pm)
E-mail: enquiries@alzheimers.org.uk
Website: www.alzheimers.org.uk
The leading care and research charity for people with dementia and their carers in England, Wales and Northern Ireland. 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.

Benefit Enquiry Line (BEL)
Tel: 0800 88 22 00 (Mon-Fri 9am-5pm)
Textphone: 0800 24 33 55
Free telephone advice and information service for people in England, Wales and Scotland with disabilities, their carers and representatives. Can give general advice on social security benefits and help with filling in forms.

Benefit Enquiry Line (BEL) (in Northern Ireland)
Tel: 0800 220674 (Mon-Fri 9am-5pm)
Textphone: 0800 24 37 87
Website: www.ssani.gov.uk/phone_services/bel.htm
Recorded answerphone call-back service outside office hours.

for dementia
6 Camden High Street
London NW1 OJH
Tel: 0207 874 7210
E-mail: info@fordementia.org.uk
Website: www.fordementia.org.uk
The mission of 'for dementia' is to improve the quality of life for people affected by dementia. They run training courses and a carers' network for carers of people with dementia.

The Princess Royal Trust for Carers
142 Minories
London EC3N 1LB
Tel: 020 7480 7788
E-mail: info@carers.org
Website: www.carers.org
Provides information, advice and support services to 180,000 carers across the UK with a network of Carers Centres and other services. Their website has lots of useful information, including a factsheet on Caring for older people.

enquiries about Enduring Power of Attorney:

Public Guardianship Office (PGO)
Customer Service Unit
Archway Tower
2 Junction Road
London N19 5SZ
Customer Service Helpline: 0845 330 2900 (Mon-Fri 9am-5pm)
EPA Helpline (for professionals): 0845 330 2963 (Mon-Fri 9am-5pm)
E-mail: custserv@guardianship.gov.uk
Website: www.guardianship.gov.uk
Launched in April 2001, after taking over the Public Trust Office. Can provide information about an Enduring Power of Attorney.

In Scotland:
Office of the Public Guardian
Hadrian House
Callendar Business Park
Falkirk FK1 1XR
Tel: 01324 678 300 (Mon-Fri 9am-5pm)
Website: www.publicguardian-scotland.gov.uk
E-mail: opg@scotcourts.gov.uk
In Scotland the equivalent of an EPA is a Continuing or Welfare Power of Attorney. The Office of the Public Guardian can give general information and advice regarding any adult who is mentally incapable of managing their own affairs. It can refer people to appropriate sources of information and can advise on legislation in Scotland (which is currently going through changes). It does not give individual legal advice. Website has useful links.

In Northern Ireland:
Speak to your local CAB, or a solicitor in the first instance.

websites

Caring Decisions
www.caringmatters.dial.pipex.com
Comprehensive source of information and advice for patients, carers, and professionals to enable them to make informed decisions about long-term care. Has details on range of subjects such as care homes, home help, rights, and Enduring Power of Attorney, plus details of books and lots of links.

Caring for Someone with Dementia
www.alzheimers.org.uk/Caring_for_someone_with_dementia/index.htm
Information about coping with caring, dealing with unusual behaviour and maintaining health and quality of life.

National Association of Citizens Advice Bureaux (NACAB)
www.citizensadvice.org.uk
Offers free, confidential and independent advice on issues including debt, benefits, housing, legal matters, employment, and immigration. There are bureaux throughout the UK. Website contains information about NACAB, social policies, and details of local CABs.

reading

Alzheimer's at your Fingertips by Harry Cayton, Dr Nori Graham and Dr James Warner (Class Publishing, 1997)
Deals with all aspects of dementia in a question and answer format and offers helpful advice.
Get this book

Dementia Reconsidered: The Person Comes First by Tom Kitwood (Open University Press, 1997)
The unifying theme of this text is the personhood of men and women who have dementia. Each chapter provides a statement on a major topic related to dementia, such as the nature of "organic mental impairment", the experience of dementia, the agenda for care practice, and the culture of care.
Get this book

Introducing Dementia: The essential facts and issues of care by David Sutcliffe (Age Concern Books, 2001)
Explains the different types of dementia, the symptoms, diagnosis and treatment and offers practical advice.
Get this book

(November 2001, resources updated December 2004)