Respite care (sometimes called replacement care) is short-term care used as a temporary alternative to a person's usual care arrangements. 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. It is important that carers have regular breaks and make time for their own needs. 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. This factsheet outlines some of the different options available.
Managing feelings of guilt or anxiety
Many people who care for someone with dementia 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 the following points:
- If a carer stretches themselves too far and becomes ill or depressed, life may become more difficult both for them and for 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 Society Dementia Helpline.
If possible, they should also discuss the situation with the person with dementia. They may prefer one sort of arrangement to another.
It is natural to prefer to stay in familiar surroundings, especially for someone living with dementia. The person may not fully understand why they have to go away and may feel confused, or may say they don't want to go. This can make the person who normally cares for them feel guilty about wanting or needing some time alone. However, it is important to remember that taking an occasional break is good both for the carer and the person with dementia, as time apart will enable the carer to 'recharge' their batteries and feel refreshed.
Tips: avoiding distress
- Avoid discussing arrangements too far ahead of the planned date.
- When the time comes, talk about the break in the context of a 'little holiday' and be positive in your explanation.
- Reassure the person with dementia that they will be well cared for and that they will be coming home again.
- Remember that any insecurity or uncertainty you show may cause the person with dementia to feel afraid, so stay calm and give information in a clear and simple manner. Stress is infectious, but so is calm.
- Remember that it is not selfish to want or need a rest.
Care at home
Arranging care in the home of the person with dementia has some advantages - for example, the person may find it reassuring to remain in familiar surroundings. However, the people who normally care for them 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. If this 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.
The options for finding someone to provide care at home include:
- Personal recommendations - perhaps another carer or the GP surgery may know of someone suitable.
- Advertising - advertising locally is often best because the person with dementia and those who care for them can get to know the person beforehand.
- Home care agencies - these can find people to provide respite care, but will probably be more expensive. Independent Age and Tourism for All (see 'Useful organisations' at the end of this factsheet) provide lists of home care agencies, but do not make 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).
Checklist: setting up respite home care
- 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 comfortable with the situation.
- Check with the insurance company that the person with dementia is 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 (see 'Useful organisations').
- Make sure that you agree with the applicant exactly what the applicant's role will be. For example, you need to make it clear if you expect them to do certain household tasks, or to take the person out each day.
- Make sure that everyone is clear about the hours and fees, and put this in writing.
It is essential 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 usual routine and activities of the person with dementia, 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 contact details of carers or family members, or of someone else to contact in an emergency.
Tip: using life history books
Life history books or personal profiles can be an invaluable toolkit for any third party spending time with the person you care for. These should include key facts about the person's life experiences, where they have worked, important people in their life, their interests and any particularly sensitive subjects. Try to include photographs that interest the person with dementia, with clear information about the photograph to stimulate conversation.
Care away from home
If short-term care is arranged away from home, the person with dementia may take some time to settle into their new environment. It may also take them some time to readjust when they get home. The person with dementia may not understand why they need to go somewhere else, so those around them need to give calm reassurance that this is only for a short time and carers need to be firm about the fact that they need a break.
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. Life history books or personal profiles can help to give vital information about the person with dementia (see 'Tip: using life history books' above). These will aid staff to understand their needs and interests.
Some forms of holiday accommodation may be able to cater for people with dementia unaccompanied. RADAR can supply information (see 'Useful organisations'), although they do not make recommendations. It is important to talk 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 providing residential care only 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, but 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 has continence problems.
Factsheet 476, Selecting a care home, explains what to look for when choosing a care home.
The Care Quality Commission (CQC) regulates all care providers in England, including care homes and care delivered in the person's home. Lists of care providers and inspection reports are available from the CQC. People in Wales should contact the Care and Social Services Inspectorate Wales (CSSIW). (See 'Useful organisations' for contact details.)
Paying for short-term care
If the person with dementia or someone they know can pay for the total cost of short-term care, they can make their own arrangements. Care homes providing nursing care are generally more expensive than homes providing residential care only. However, fees for either vary greatly.
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 their carer need help with the cost of care, at least one of them (see 'Carers' assessments', below) will need a community care assessment. The local authority arranges these. Local authorities differ in their procedures and the services they consider to be priorities. They may contribute towards the cost of short-term care in certain circumstances. (See Factsheet 418, Community care assessment.)
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.
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.
Local authorities have discretion to allow direct payments to be used for respite care. Consult your local authority to find out.
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 by inpatient stays. For more information, contact the local benefits agency or Citizens Advice Bureau.
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. Independent Age and Turn2us can point carers in the right direction (see 'Useful organisations' for details).
The UK's leading care and research charity for people with dementia and those who care for them. The helpline provides information, support, guidance and referrals to other appropriate organisations.
Care and Social Services Inspectorate Wales (CSSIW)
Supports the improvement of care, early years and social services in Wales by raising standards, improving the quality of services, promoting best practice, and through regulation, inspection and development.
Care Quality Commission
Regulates, inspects and reviews all adult social care services in the public, private and voluntary sectors in England.
Charity that provides information and advice to carers about their rights, and how to access support.
Citizens Advice Bureau (CAB)
Your local CAB can provide information and advice in confidence or point you in the right direction. To find your nearest CAB look in the phone book, ask at your local library or look on the citizens advice website (above). Opening times vary.
Provides an information and advice service for older people, their families and carers, focusing on social care, welfare benefits and befriending services. This is integrated with local support, including one-to-one and group befriending schemes.
RADAR National Key Scheme (NKS)
Disability Rights UK
49-51 East Rd
London N1 6AH
T 020 7250 8191 (Monday-Friday, 10am-12.30pm, 1.30pm-4pm)
National organisation run by disabled people that campaigns and works with disabled people to promote independence. It produces a wide range of publications on disability, and can refer people to relevant specialist organisations.
Tourism for All
Charity, formerly known as Holiday Care, that provides advice and information on accessible holidays and travel for older people and people with special needs, and their carers, in the UK and abroad.
Charity that provides information and support about accessing welfare benefits, grants and other financial help.
Revitalise is a national charity providing essential breaks (respite care) for people with disabilities, visually impaired people, and carers. Revitalise's centres provide 24-hour care on-call and personal support in a relaxed, holiday environment. They also run breaks especially for guests with dementia.
Last reviewed: September 2010
Last updated: January 2015
Reviewed by: Vitalise
This factsheet has also been reviewed by people affected by dementia.
A list of sources is available on request.
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