Alzheimer's Society

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 applies to people receiving care in England. 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. 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.

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 regularly and 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 stay in their own home, there are many additional support options available.

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 branch. 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 to help with disability, 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 428, Adaptations, improvements and repairs 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.

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 Concern group.

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

Social services may have a list of local private home care agencies, and Counsel and Care and Alzheimer's Society branches can provide lists of private home care agencies, although these are not recommendations.

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. However, any move to new surroundings is likely to increase a person's confusion, and no sheltered scheme offers the constant monitoring and support available in a care home. 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 Help the Aged. Both organisations stress the importance of carefully checking the financial implications and of taking legal advice before committing to a scheme. (See 'Useful organisations', below.)

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.

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 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 circumstance − for example, if the person with dementia is very confused and frail, has difficulties walking, has other illnesses or disabilities, or is doubly incontinent.

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.

Regulation and inspection

In England, The Commission for Social Care Inspection (CSCI) was launched in April 2004 as the single independent inspectorate for all social care services in England. CSCI 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. In Wales, a similar role is carried out by the Care and Social Services Inspectorate Wales (CSSIW), launched in April 2007.

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

If you have a complaint, always try to settle any difficulty at a personal level first, either with the person concerned or their manager. The problem may simply be due to a failure of communication or a misunderstanding. If an informal approach fails, there are a number of procedures you can follow, depending on the circumstances.

First, talk things through with someone who can advise you. Your local Citizens Advice Bureau, Alzheimer's Society branch, Age Concern group, Counsel and Care group or the Relatives and Residents Association may be able to help. For details of how to contact these organisations, ask at your local library or see the Society's information sheet Voluntary organisations. Counsel and Care publishes a helpful information sheet about how to make a complaint.

If you want to follow formal complaints procedures, there are currently two separate processes for health and social care. Unresolved complaints about NHS services go through the following three stages: local resolution by the provider organisation, investigation by the Healthcare Commission, and investigation by the Health Service Ombudsman. Meanwhile, there are four stages for unresolved social care complaints: local resolution by the service provider, independent investigation by a single investigator, a review by an independent panel, and finally a review by the Local Government Ombudsman. This can be confusing for people who use a range of services.

From April 2009, there will be a new unified complaints system for health and social care in England. This means that the same complaints system will be used whether services are provided by the NHS or social services. This will be particularly helpful for people who use a combination of services from different providers.

Below is some guidance on making complaints about different types of services.

If the person is living at home

• If you have a complaint about any of the services provided by social services, contact your social services department. They will explain how to use their complaints procedure.
• If the complaint involves services provided by the NHS, you can use the NHS complaints procedure. Ask the particular service for a copy of their complaints procedure or contact your local health authority or NHS Direct on 0845 4647.
• If you have a complaint about another local authority department, a voluntary organisation or a private agency, ask them for a copy of their complaints procedure.
• If your complaint involves home care services, you can also complain to your area care standards office. This has powers to ensure that agencies providing home care meet certain standards.

If the person is in sheltered accommodation

• First, discuss the problem with the landlord or managing agent.
• If you are unable to settle matters informally, ask whether they have a complaints procedure.
• If you want further help, contact Advice Information and Mediation Service (AIMS) (see 'Useful organisations', below).

If the person is in a care home

•  All care homes are required to have a complaints procedure. Ask for a copy if you have not already been given one.
• If arrangements for the care home were made through social services, you may wish to get some advice from the person in social services responsible for the care plan.
• If your complaint involves nursing care provided by the NHS, ask your local health authority about the complaints procedure.
• You can also complain about a care home through your local care standards office.

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue.

Useful organisations

Advice, Information and Mediation Service (AIMS)

Astral House
1268 London Road
London SW16 4ER
T 0845 600 2001 (9.30am-4.30pm weekdays)
E aims@ace.org.uk
W www.ageconcern.org.uk/aims

A department of Age Concern England that acts as an advice, information and mediation service for people living in sheltered accommodation.

Age Concern Cymru

Ty John Pathy
13-14 Neptune Court
Vanguard Way
Cardiff CF24 5PJ
T 02920 413 555
E enquiries@accymru.org.uk
W http://www.accymru.org.uk/

Provides advice and information for older people in Wales.

Age Concern England

Freepost SWB 30375
Ashburton
Devon TQ13 7ZZ
T 0800 00 99 66 (free helpline every day 8am-7pm)
E use the enquiry form on the website (see below)
W http://www.ace.org.uk/

Provides advice and information for older people in England. Useful factsheets include Finding help at home and Finding residential and nursing home accommodation.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1JX
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 and Social Services Inspectorate Wales (CSSIW)

Cathays Park
Cardiff CF10 3NQ
T 01443 848450
E cssiw@wales.gsi.gov.uk
W http://www.cssiw.org.uk/

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.

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 http://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.

Commission for Social Care Inspection (CSCI)

33 Greycoat Street
London SW1P 2QF
T 0845 015 0120 (helpline, charged at national rate)
   0191 233 3323 (helpline, charged at local rate)
E enquiries@csci.gsi.gov.uk
W http://www.csci.org.uk/

Regulates, inspects and reviews all adult social care services in the public, private and voluntary sectors in England. Note that the CSCI is expected to be superseded by the Care Quality Commission in 2009.

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 http://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 http://www.eac.org.uk/
    http://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.

Help the Aged (England)

207-221 Pentonville Road
London N1 9UZ
T 020 7278 1114
0808 800 6565 (Seniorline freephone, weekdays 9am-4pm)
E info@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Provides advice and information services for older people and their carers. See the booklet on residential care and the factsheet on sheltered housing.

Help the Aged (Wales)

12 Cathedral Road
Cardiff CF11 9LJ
T 02920 346 550
E infocymru@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Provides advice and information services for older people and their carers.

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 http://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: June 2008
Last reviewed: June 2008

Reviewed by: Louise Lakey, Policy Officer, Alzheimer's Society