Alzheimer's Society

People who care for someone with dementia often carry on without realising how tired or tense they have become. A break or holiday can help them relax and recharge their batteries. This information sheet outlines some of the different options.

These include the provision of care both at home and away from home.It is important that carers have regular breaks and make time for their own needs. This may mean organising some short term care for the person with dementia, known as respite care.

Respite care may also be needed in other situations. For example, the carer might have to go into hospital or might have other important commitments.

Carers' feelings

Many carers feel worried or guilty about taking a break and leaving the person they are supporting, even for a short period. It is important to remember that:

• If the carer stretches themselves too far and becomes ill or depressed, it can make life more difficult for both them and the person with dementia.
• Carers are entitled to time to themselves to do what they want to do.

Many carers find it helpful to discuss their concerns with a professional with knowledge of dementia, with other carers or with someone on the Alzheimer's Helpline.

If possible, they should also discuss the situation with the person with dementia. They may prefer one sort of arrangement to another.

Care at home

Arranging care in the person with dementia's own home has some advantages. The person may find it reassuring to remain in familiar surroundings. On the other hand, the carer might have to spend considerable time and effort making arrangements to ensure that the person is well cared for and that the home runs smoothly while they are away.

The easiest solution might be to arrange for a friend or relative to stay. However, if that isn't possible there are a number of other options. It is important to think carefully about the type of care required. Full time nursing care is usually very expensive and may not be necessary.

Here are some options for finding someone to provide care at home:

• Personal recommendations - perhaps a fellow carer, the GP surgery or the local Alzheimer'sSociety branch may know of someone suitable.
• Advertisements - advertising locally is often best because the carer and person with dementia can get to know the person beforehand.
• Home care agencies - these can find people to provide respite care, but it will probably be more expensive. Counsel and Care and Holiday Care (see Useful contacts below) provide lists of home care agencies. However, these are not recommendations. The local authority may also have a list of local home care agencies.
• Care packages - if the person does not need support 24 hours a day, a care package involving family, friends or neighbours, social services, voluntary agencies and even some private care might be the answer.
• The local authority - some local authorities arrange home care although they vary in this respect (see Community care assessments below).

Precautions

The following checklist may be helpful when arranging care.

Carers should:

• Always interview the applicant personally and take up references.
• Ask whether the applicant has any experience or training in dementia care.
• Introduce the applicant to the person with dementia to ensure that everyone is happy with the situation.
• Check with their insurance company that they are covered for someone working in their home in case of accident or theft.
• Ask the applicant about their employment status. If they are not self-employed, the carer might be responsible for their tax and national insurance. The local citizens advice bureau may be able to advise.
• Make sure that they agree with the applicant exactly what the applicant's role will be. For example, the carer needs to make it clear if they expect them to do certain household tasks or take the person out each day.
• Make sure that both they and the applicant are clear about the fees and that this is in writing.

Instructions

It is important for the carer to leave very clear explanations and instructions for whoever is caring for the person with dementia, preferably in writing. This means that there is less possibility of them forgetting or of there being a misunderstanding. Instructions should include:

• Details of the person with dementia's usual routine and activities, their likes and dislikes and any dietary, religious or cultural practices that should be respected
• Clear instructions about the running of the home - for example, which keys lock which doors and how the washing machine operates
• Important phone numbers - for the GP surgery, for example
• The carer's contact details or those of someone else they can contact in an emergency.

Care away from home

If short term care is arranged away from home, the person with dementia may take some time to settle down into their new environment. It may also take them some time to readjust when they get home.

The carer should visit the place beforehand, preferably with the person with dementia, to ensure that the place is suitable and that it can cater for individual needs. They should also check that staff have enough information to enable them to relate to the person with dementia as an individual, to reassure them when necessary and to avoid any unnecessary distress.

Holiday accommodation

Some forms of holiday accommodation may be able to cater for people with dementia unaccompanied. RADAR can supply information (see Useful contacts). These are suggestions and not recommendations. It is important that the carer talks things over with the manager before booking.

Short term care schemes

Another option is short term care provided by residential care homes, nursing homes or hospitals. This is not always easy to arrange as it depends on a place being vacant at a specific time. However, some homes and hospitals put aside a number of places for short term care, enabling carers to plan ahead.

• A home only providing residential care will probably be suitable if the person with dementia is mobile and not too confused. Staff usually provide support with washing, dressing and going to the toilet and will assist at mealtimes, if necessary. They do not provide nursing care.
• A home providing nursing care is likely to be suitable if the person with dementia is seriously confused, has difficulty moving or is doubly incontinent.

The Society's carers' advice sheet Selecting a care home explains how to find lists of homes providing residential and/or nursing care in local areas and the points to look for.

Paying for short term care

If the person with dementia or the carer can pay for the total cost of short term care, they can make their own arrangements. Homes providing nursing care are generally more expensive than homes providing residential care only. However, fees for either vary greatly so it is a good idea to approach several homes.

The person with dementia should have a community care assessment (see below) even if they are paying for the care themselves. This will help to establish what kind of care they need.

Community care assessments

If the person with dementia and the carer need help with the cost of care, one of them at least will need a community care assessment. The local authority arranges these. For more information see the Society's information sheet Community careassessment. Local authorities differ in their procedures and the services they consider to be priorities. Local authorities may contribute towards the cost of short term care in certain circumstances.

Local authority arrangements

If a person has been assessed as needing and qualifying for short term care, the local authority may provide it. However, the person with dementia may be asked to contribute towards the cost.

The local authority can charge the person with dementia for short term stays in care homes (of under eight weeks) in one of two ways. They can either assess the amount they should pay, based on their income and capital and according to national rules, or they can charge what they think is a 'reasonable' amount, although this should take account of individual circumstances. If care is provided in the person's own home the local authority can ask the person with dementia to pay 'a reasonable amount' towards the cost.

NHS arrangements

In some cases, the NHS may be able to provide short term care, particularly if the person is in the later stages of dementia. Carers should check with their GP. There is no charge for NHS services but benefits are sometimes affected for inpatient stays. The local benefits agency or citizens advice bureau can give advice.

Carers' assessments

Carers are eligible for an assessment of their own needs in relation to their caring role. If someone is caring for a person with dementia and has not had an assessment of their needs, they should ask their local authority for one.

Local authorities can provide carers with services in their own right to help maintain their health and well-being. This may include help with short term care either in the person's own home or in a care home. However, in some cases, the person's income may be assessed and they may be asked to contribute towards the cost of care.

Charities

If a carer is having difficulty financing a holiday for the person with dementia or paying for respite care they may be able to get financial help from a charity. Counsel and Care and Holiday Care can point carers in the right direction. Carers can also consult A guide to grants for individuals in need, published by the Directory for Social Change. A copy is available in every citizens advice bureau.

Useful contacts

Carers UK

20-25 Glasshouse Yard
London EC1A 4JT

Carersline: 0808 808 7777 (Weds and Thurs 10am-12pm and 2pm-4pm)
Email: info@carersuk.org
Website: http://www.carersuk.org/

Counsel and Care

16 Bonny Street
London NW1 9PG

Advice line: 0845 300 7585 (weekdays 10am- 12.30pm and 2pm-4pm)
Email: advice@counselandcare.org.uk
Website: http://www.counselandcare.org.uk/

Holiday Care

7th Floor, Sunley House
4 Bedford Park
Croydon CR0 2AP

Information line: 0845 124 9971
Email: info@holidaycare.org
Website: http://www.holidaycare.org.uk/

RADAR

12 City Forum
250 City Road
London EC1V 8AF

Telephone: 020 7250 322
Minicom: 020 7250 4119
Email: radar@radar.org.uk
Website: http://www.radar.org.uk/

Vitalise

12 City Forum
250 City Road
London EC1V 8AF

Telephone: 0845 345 1972
Website: http://www.vitalise.org.uk/

Vitalise provides holidays and respite care for severely physically disabled people, with or without their carers, at five purpose-built centres in the UK. There are also special Alzheimer's holidays for people with dementia and their carers which are subsidised by the Alzheimer's Society. Contact Vitalise for details.

Further reading

We can provide a list of further reading on request. Please contact the librarian at the Alzheimer's Society national office on library@alzheimers.org.uk

Information Sheet 462

Last updated: May 2005
Last reviewed: May 2005