Choices in care

As dementia progresses, people usually need to receive care and support services. It is a good idea to consider all your options carefully and make arrangements as soon as more help is needed. This factsheet looks at the different choices for receiving care in England. Please be aware that the level of services available may vary between local authorities. Different arrangements apply in Wales, Northern Ireland and Scotland.

How the local authority assesses need

Local authority social services departments are the main providers of care and support services. If a person with dementia or their carer is in need of support, they should contact the local social services department to explain. The department will then carry out an assessment of the person's needs and identify what services would be appropriate to meet those needs. This is known as a community care assessment. (For more detail on this topic, see Factsheet 418, Community care assessment.)

If the department assesses a person as being in need of certain services, it has a duty to provide the services that fall within their eligibility criteria (locally set rules on what type of needs the local authority will meet). The person may have to contribute towards the cost of these services.

Local authorities can provide services directly themselves, or may make arrangements for private or voluntary-sector organisations to provide care on their behalf. The person requiring services can also opt to receive a direct payment so that they can purchase the services that they need (see Factsheet 473, Direct payments). Services vary from area to area, but range from those that allow someone to remain independent in their own home (such as meals on wheels, day care, equipment and home adaptations) to residential care. The views and preferences of the person receiving the service should always be taken into account when deciding which services are appropriate.

Care plans

If, after assessing the person's care needs, the social services department agrees that certain services should be provided, it will give the person a written care plan outlining these services. This applies whether the person lives at home or in a care home. Care plans should be reviewed in the first three months and then annually, or as needs change. If a review has not been carried out recently, or if one may be necessary, the person or their carer should contact social services and ask for a review.

In addition, care homes must provide an individual care plan for each resident. This must be regularly reviewed to take account of changing needs. Carers may also ask for an assessment of their own needs. For more information see the Factsheet 418, Community care assessment.

Thinking through the options

Once the social services department has confirmed what services the person is eligible to receive, the person and their carer can begin to think through the options.

Even if the assessment concludes that the person's needs are not yet urgent enough to receive help from social services, or if some services are not available under the local authority's eligibility criteria, an assessment will give everyone clearer information about the situation and the kinds of help available from other sources. The person or their family or carer could arrange services themselves, or through a voluntary organisation or private agency.

A key decision is whether the person can remain in their own home, or whether they would prefer to move into sheltered housing or a care home. If they want to stay in their own home, there are support options available such as home care workers or domestic help. See Factsheet 517, Living alone, for more information.

It is also important to consider the financial implications of the options available. Social services should be able to give an idea of how much the person will have to pay towards the costs of the various services that are arranged through them. Services provided by the NHS, such as community nursing, are free. Anyone who is arranging services themselves, whether through a voluntary organisation or a private agency, will need to make their own enquiries.

It is important not to rush into a decision. It might help to also talk to friends and relatives, other carers and your local Alzheimer's Society. Local voluntary organisations are a source of further information, advice and practical help. (See the Society's Factsheet 412, Voluntary organisations.)

Below is some guidance about what to consider when you are thinking about the kind of care the person in question needs.

Help at home

If the person with dementia is staying in their own home, there are a number of points to consider.

Benefits

Check that all available benefits are being claimed. Extra benefits for the person with dementia or their carer can make a great difference. For more details on benefits and how to claim them, see Factsheet 413, Benefits.

Equipment

Would equipment such as an elevated toilet seat, a walking frame, a gas detector or a memory board make it easier for the person to stay in their own home? The Society's Factsheet 429, Equipment, adaptations and improvements to the home, gives details on what to look for and where to go for advice. (See also Factsheet 437, Assistive technology.)

Adaptations or repairs

Adaptations such as a wheelchair ramp, a specially designed shower, improvements to the heating system or basic repairs might enable the person to remain at home. For information about who to ask for advice, and what kind of grants are available, see Factsheet 429, Equipment, adaptations and improvements to the home.

Practical help

Would meals on wheels, help with shopping, cooking or other domestic tasks, or assistance with bathing or dressing make a difference? Ask social services whether they can arrange these services or put you in touch with an appropriate organisation. If nursing care is needed at home, speak to your GP.

You can search for details of private home care agencies in your area on the website of the Care Quality Commission (see 'Useful organisations' for details).

Company and breaks for carers

Would a befriending scheme, home care service, day care or respite care be helpful? Again, ask social services whether they arrange these services. If you are arranging respite care, see Factsheet 462, Respite care.

If social services are unable to arrange appropriate help, find out what services other organisations can provide. Ask at your local library or Citizens Advice Bureau, or at a local Alzheimer's Society or Age UK group.

Counsel and Care and Age UK publish helpful factsheets about help at home and what to look for when making your own arrangements.

Sheltered accommodation

Another option is sheltered accommodation. This enables people to continue to live independently but with the reassurance that help is at hand. It may be suitable for some, but not all, people with dementia. Moving to new surroundings can sometimes increase the person's confusion so it is important to talk through the pros and cons with professionals involved in dementia care, as well as with family and friends.

There are many different types of sheltered accommodation, both to rent and to buy − from bungalows and self-contained flats to bedsits with shared facilities. The support offered ranges from a community warden who lives on the premises and can be contacted by means of a community alarm, to domestic help or provision of meals in extra care or very sheltered schemes. There are also some close care schemes offering accommodation on the same site as a care home, and providing some care services.

Extra care sheltered housing or very sheltered housing

Both extra care and very sheltered housing are sheltered housing that offer a greater level of care. Either could be ideal for people who are less able to manage on their own, but who do not need the level of care available in a residential home. Services offered will vary between schemes, but meals and some personal care are often provided. Again, this may be suitable for some, but not all, people with dementia.

The person can continue to receive services that they have been assessed as needing in sheltered accommodation in the same way that they can at home.

To find out more about sheltered accommodation schemes in your area, contact the Elderly Accommodation Counsel, which publishes lists of schemes. It also produces helpful information about the different types of schemes, as does Age UK. Both organisations stress the importance of carefully checking the financial implications and of taking legal advice before committing to a scheme. (See 'Useful organisations' for details.)

Care homes

Another option is to move into a home providing residential or nursing care. Whether a person with dementia needs residential or nursing care depends on the degree of their dementia, and on any other illnesses and disabilities. A community care assessment will consider the level of care that would be appropriate for the person (see Factsheet 418, Community care assessment for more information).

Most care homes offering residential care are run privately or by voluntary organisations, although a few are still run by local authorities. Most care homes offering nursing care are also run privately or by voluntary organisations, although the NHS runs a few. Some homes are able to provide both residential and nursing care.

Alzheimer's Society produces factsheets on various issues relating to care in a care home:

• Factsheet 476, Selecting a care home gives information on finding a home and what to look for in a care home.
• Factsheet 468, Paying care home fees explains the different ways of funding care in a care home.
• Factsheet 452, Assessments for NHS-funded nursing care explains the arrangements for assessing and funding care home residents for the nursing element of their care.

Residential care

Most residential homes provide personal care for the residents who need it. This might include help with dressing, washing, going to the toilet and taking medicine. If you are considering a residential home, find out whether suitable care can still be offered if the person with dementia becomes more confused and dependent, as a move to another home can be very upsetting.

Nursing care

Nursing homes always have a trained nurse on duty and can offer 24-hour nursing care in addition to personal care. Nursing care may need to be considered in certain circumstances - for example, if the person with dementia is very confused and frail, has difficulties walking, has other illnesses or disabilities, or continence problems.

NHS continuing healthcare

Very occasionally, someone with dementia who needs intensive care may be eligible for free continuing NHS healthcare - usually in an NHS nursing home or in an NHS-funded bed elsewhere. To find out more, ask the person's GP or consultant or see the Alzheimer's Society booklet, When does the NHS pay for care?

Regulation and inspection

The Care Quality Commission (CQC) is the single independent inspectorate for all social care services in England. It superseded the Commission for Social Care Inspection in 2009. CQC has a wide remit − it inspects, regulates and reviews all adult social care services in the public, private and voluntary sectors. A report of the service is then available for the public to view.

The role of these organisations is to protect vulnerable people. They have powers to require care homes to care for residents appropriately and provide suitable accommodation for people's assessed needs.

Complaints procedures

The systems for complaining about local authorities and NHS services have changed to two-tier systems. You should first complain at a local level and if your complaint is not resolved, you should then complain to the relevant ombudsman.

Complaints about care paid for by the local authority

1. Local resolution stage - Contact the person or service concerned with your care to see if they can sort out the problem. Ask them to put their response in writing. If you are not satisfied with their response, ask to see their complaints procedure and then make a formal complaint.
2. Local government ombudsman - If you are unhappy with the response to your complaint, you can contact the local government ombudsman. You should go through the council's complaints procedure before contacting the ombudsman.

Complaints about care paid for by the NHS

1. Local resolution stage - Try to resolve the complaint with the member of staff who has been caring for you. Your local Patient Advisory Liaison Service, based at your local hospital, can help you with this. If you are not satisfied with the response, you can make a formal complaint. This should be made to the Primary Care Trust's complaints manager who will investigate your complaint. An independent advocacy service, called the Independent Complaints Advisory Service, is available to support people through the NHS complaints process. NHS Direct can provide details for contacting PALS and ICAS, see 'Useful organisations'.
2. Parliamentary and Health Service Ombudsman - If you are not happy with the complaints manager's findings, you can complain to the Health Service Ombudsman. They will investigate complaints about administration and clinical judgement. You must have gone through the NHS complaints procedure first.

Complaints about care that you pay for yourself

If you have a complaint about a care home, sheltered housing or care that you have been receiving in your home, you should first talk to the service provider. If you need to make a formal complaint, ask for a copy of their complaints procedure.

From October 2010, if you are not happy with the response to your complaint, you can take it to the Local Government Ombudsman who will provide an independent complaints review service.

Age UK has detailed factsheets about making complaints about care services, see 'Useful organisations' for details.

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Useful organisations

Age UK

York House
207-221 Pentonville Road
London N1 9UZ
T 0800 169 8787 (general enquiries)
  0800 169 6565 (advice line)
E contact@ageuk.org.uk
W www.ageuk.org.uk

Provides information and advice for older people in the UK. Age UK has been created by the merger of Age Concern and Help the Aged.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1LB
T 020 7423 3500
E info@alzheimers.org.uk
W alzheimers.org.uk

The UK's leading care and research charity for people with dementia, their family and carers.

Care Quality Commission

National Correspondence
Citygate
Gallowgate
Newcastle upon Tyne NE1 4WH
T 03000 616161
E enquiries@cqc.org.uk
W www.cqc.org.uk

Regulates, inspects and reviews all adult social care services in the public, private and voluntary sectors in England. Formerly the Commission for Social Care Inspection (CSCI).

Carers UK

20 Great Dover Street
London SE1 4LX
T 0808 808 7777 (free carers' line, Wednesday and Thursday 10am-12pm and 2pm-4pm)
E info@ukcarers.org
W www.carersuk.org

Provides information and advice to carers about their rights, and how to access support. See in particular the booklet Residential and nursing home care.

Counsel and Care

Twyman House
16 Bonny Street
London NW1 9PG
T 0845 300 7585 (advice line, weekdays 10am-4pm except Wednesdays 10am-1pm)
E  advice@counselandcare.org.uk
W www.counselandcare.org.uk

Provides advice, information and financial support for older people, their families and carers. Useful factsheets include Help at home, What to look for in a home care agency and Community care and the NHS: guide to making complaints.

Elderly Accommodation Counsel (EAC)

3rd Floor
89 Albert Embankment
London SE1 7TP
T 020 7820 1343
E info@eac.org.uk
W www.eac.org.uk
    www.housingcare.org (sister site)

Produces information and advice about accommodation for older people, aimed at older people themselves, their families, carers and advisors, and all those who work with them. See the range of factsheets, and the booklet For you and yours.

Local Government Ombudsman

PO Box 4771
Coventry  CV4 0EH
T 0300 061 0614
E advice@lgo.org.uk
W www.lgo.org.uk

Independent organisation that investigates complaints about councils and care providers and looks for a resolution.

NHS Direct

T 0845 4647 (24 hour helpline)
E use form on website (below)
W www.nhsdirect.nhs.uk

Provides information and advice about health, illness and health services.

Relatives and Residents Association

24 The Ivories
6-18 Northampton Street
London N1 2HY
T 020 7359 8148
   020 7359 8136 (advice line, weekdays 9.30am - 4.30pm)
E info@relres.org
W www.relres.org

Advises relatives and close friends of people in care homes on a range of topics, from how to get an assessment to what to do when problems occur in a home.

Factsheet 465

Last updated November 2010
Last reviewed: November 2010
Next review due: November 2012

Reviewed by: Jack Gillis, Helpline Co-ordinator, Alex Clay, Knowledge Net Project Officer and Luke Warren, Information Officer (Legal and Welfare Rights), Alzheimer's Society