| Arranging Care | Types of long-stay care |
| Selecting a Home | Help with Costs |
| Hospital Discharge | Fact Sheets |
Planning ahead when someone in your family has dementia makes sense both for your relative and for you. Although everyone may be coping quite well at present, a time may come when you can no longer manage. Try to find out in advance what kind of services may be available and talk through the alternatives with people who have experience in the field. You will then be able to take appropriate steps before a crisis occurs and have time to come to terms with what can be a very upsetting decision.
The local authority is responsible for arranging services for the most vulnerable members of the community see local authority assessments. Such services range from care in the person's own home or at day centres, for example, to residential and nursing care. In order to qualify for such services the person with dementia will need to be assessed by the local authority.
Each local authority has its own system for making assessments. Your social services department, GP surgery or citizens advice bureau can give you details on who might be eligible for an assessment, how to apply, what type of services are available and how to make a complaint.
Your relative's requirements and wishes, as well as your own views and needs as a carer, should be taken into account in any assessment that is carried out. If the local authority agrees that certain services should be provided you should be given a care plan outlining just what the local authority will organise. Such care plans should be reviewed from time to time.
The person will also be assessed for the amount they can contribute towards the cost of their care. They should only be assessed on their own income and savings or their share of jointly-held resources. Local authorities have to use a nationally set calculation for places in residential or nursing homes, but will make their own decisions about charges for services in the family home. These, however, must be reasonable for the individual to pay.
If the local authority assesses the person as needing residential or nursing home care they should suggest a home or a number of homes that they consider suitable. If there is no suitable place available at the price they are normally prepared to pay, they may have to pay extra in order to meet your relative's assessed needs.
If there is a particular home that you prefer, you can ask the local authority to arrange a place there instead. The local authority will do so, providing the home is appropriate for the person's needs and providing that the home is willing to take them and to accept the local authority's terms and conditions.
The home can be anywhere in the country but the fees should not be greater than the amount that the local authority would usually expect to pay for someone with your relative's needs, although those needs may include, for example, to be near relatives or friends.
However, the local authority will arrange a place in a more expensive home if someone else, such as a member of the family or a charity, agrees to pay the difference for as long as the person needs to stay there. The local authority will either pay the home's fees and collect your relative's contribution or, if everyone agrees, your relative and the local authority can each pay their contributions directly to the home.
The local authority's contract with the home will state what the home should provide in terms of care. The person's care plan should also state what the local authority expects the home to provide. If you are unhappy about any aspect of the care and are unable to sort this out with the home, contact the person in the local authority responsible for your relative's care plan. If this still proves unsatisfactory you can use the local authority complaints procedure.
If your relative can afford to pay the fees for private residential or nursing home care for the foreseeable future, and if such long stay care seems the best option, you can make your own arrangements with the home of your choice. However, unless you are certain that the person's savings will not run out, it would be sensible to approach your local authority for an assessment first.
If the local authority agrees that the person needs to enter a home, they can make an agreement with the home, although they will not make any financial contribution towards the cost until your relative's savings drop to £16,000. If you do not get such an agreement there may be difficulties if the cost of the person's care is greater than the amount the local authority says it could pay to provide a place which would meet their needs.
If you are unable to get such an assessment before your relative enters the home you should at least make sure that one is arranged before the person's savings get too low and certainly before they reach the accepted limit of £16,000.
The type of long-stay care appropriate for your relative will depend very much on the degree of their dementia. They may be able to manage in a residential home that offers help with washing, dressing and toileting for example, or you may find they need the sort of attention that can only be provided by nursing home care. If a residential home is being considered you will want to make sure that suitable care can be offered as your relative becomes more confused and dependent.
These residential homes, sometimes known as Part III homes, are run by the social services department of the local authority. Some homes take elderly people with a wide range of needs; others may cater for special needs such as dementia. Many local authorities are now reducing their provision of such homes or transferring them to other forms of management.
Private homes are run for profit by organisations or individuals. Voluntary homes are run on a non-profit making basis by bodies such as registered charities or religious denominations. All homes must be registered with the local authority and homes caring for four or more people should be regularly inspected. The registrations officer of your local social services department can give you a list of private and voluntary homes in your area although he or she will be unable to make recommendations.
Most nursing homes are privately owned by individuals or organisations. A few are run by charities or voluntary organisations. All nursing homes must be registered with the health authority and should be regularly inspected. Nursing homes must always have a trained nurse on duty and be able to provide 24 hour nursing care. The district nursing officer of the registrations inspectorate of your health authority can give you a list of homes in your area but cannot recommend individual homes. Some homes have a dual registration for residential and nursing care.
NHS continuing care may also be provided on hospital wards or units or, in some areas, in nursing homes. However, many health authorities have substantially reduced their numbers of continuing care beds. Ask your GP about NHS provision.
It is a good idea to look at a number of homes, whether or not the person goes through the local authority assessment procedure. You will then have a better idea of what exists and what you can expect.
The lists of registered homes in your area will not tell you which homes offer places to people with dementia. Your relative's GP, psychogeriatrician, social worker or community psychiatric nurse may be able to give you this sort of information. So may your local Alzheimer's Disease Society, Age Concern group or citizens advice bureau. Once you have some names, you can write to or telephone a number of homes and ask about matters such as the level of care provided, the fees and the waiting list. Many homes will send you a glossy brochure but remember these can sometimes give a misleading impression.
It is a good idea to make appointments to visit several homes before choosing one. Spend time looking round and talking to staff and residents. Don't be afraid to ask questions. It may help to have a check-list of things to observe and ask as you go round. Here are some suggestions.
Is the home easy to get to for those who want to visit? Are there shops, a pub or a park in walking distance, for example, if your relative enjoys going out? Is there a garden where they can wander safely?
Are you greeted in a friendly way when you arrive? Is the atmosphere homely and welcoming? Is it clean without being too tidy? Is it pleasantly furnished and decorated? Are there any unpleasant smells?
If the person with dementia has a physical disability you will want to make sure that they can get around. Are the corridors and toilets wide enough for a walking frame or wheelchair? Are there suitably adapted toilets and baths? Is there a ramp or lift?
Can your relative have a single room? Are the bedrooms bright and pleasant? Are residents encouraged to bring in some of their own furniture and possessions? Can residents go to their rooms when they wish to be alone? Do staff respect the need for privacy and knock on the bedroom door?
Are there enough toilets within easy reach of the bedroom and the living area? Is there room for staff to help someone and keep the door closed? Are staff tactful about helping residents with toileting or changing them if they are incontinent?
Is there more than one room where residents can sit? Is there somewhere where they can go to be quiet or to see visitors? Are there smoking and non-smoking areas? Are chairs arranged in groups to encourage talking and activities?
Are special diets catered for and can residents likes and dislikes be taken into account? Are choices offered at mealtimes? Can a resident sometimes eat in their room or eat at a different time, just as they would at home? Are there facilities for making snacks? Do residents seem to enjoy meals?
What happens if your relative is unwell? Which doctor will they see? What arrangements are there about medication?
Are visitors welcome at any time? Can they join the resident for a meal? Are they encouraged to take them out? Can they stay overnight if the resident is very unwell? Are children made to feel at home?
Are residents involved in activities or chatting? Do they seem alert and interested? Are they nicely dressed and groomed? Do they seem contented?
Are residents encouraged to do as much for themselves as they can? Are there opportunities for them to help staff if they wish? Are there activities organised each day or are they just left in front of the television? Are they encouraged to take some form of exercise? Are there trips and outings? Are special events celebrated? Do people come in from the community to visit, help with activities or entertain?
If someone comes from a different background or culture from most other residents are their particular needs being catered for in an understanding and sensitive way? Do staff show an interest in and respect for such differences that may involve diet, religious observances, hygiene practices, clothes and ways of addressing and relating to other people, for example?
Do staff seem friendly and caring? Do they treat residents with respect or talk down to them? Do they have any experience of dementia? Do they make time to sit and chat to residents - do they know their backgrounds and interests? Do they make a point of talking to residents while they are helping them with physical tasks such as washing and dressing? Do they seem to enjoy their work? How many staff are there on duty in the day and at night? Do they have training in dementia?
Does the manager have a special knowledge of dementia? Can they deal with problems such as unpredictable behaviour in a sympathetic way? Do they stress that this is the residents home or do they seem over-concerned with rules and regulations? Do they see seem tolerant and caring as well as efficient and capable? Do they have a friendly manner with both staff and residents? Do they answer your questions openly? Do they seem to understand your worries? If they are not the owner of the home how much contact does the owner have?
What are the weekly charges? How much notice is given if the fees are raised? What extras might there be for example, laundry, incontinence pads, hairdressing?
Homes are not obliged to provide a contract. However, if you are thinking seriously about a particular home and making arrangements on your relative's behalf, you will want to make sure that they give you a statement in writing about the care and services provided, what is included in the fee and what might be charged as an extra item. You may also want such a statement even if the home has a contract with the local authority. You should get advice from a solicitor or a citizens advice bureau before signing any agreement. You need to find out whether your relative can stay in the home however much their condition deteriorates or, if not, who would be responsible for finding alternative accommodation and how much notice you would be given.
Do staff carry out a full home assessment before admitting a resident? Do they compile a detailed list of their habits, interests and tastes? Will there be a member of staff who is particularly responsible for your relative? Can you talk to staff about your own feelings and anxieties? Does the home offer day care or respite care which enables people to get used to a place before moving in? Is there a trial period? Is there a waiting list?
Once you have found somewhere you like then it might be a good idea to arrange to visit again with your relative so that you can see what their reactions are and how they might settle in.
The ways in which people's savings and income, including income from benefits, are assessed to see how much they can contribute towards the cost of care are quite complex. Seek advice on your relative's financial situation and what they may be entitled to before they go into care. Advice can be obtained from a citizens advice bureau, local benefits agency or by telephoning the Benefits Enquiry Freeline on 0800 882200 between 8.30am and 6.30pm weekdays and 9am to 1pm Saturdays. For Northern Ireland telephone 0800 220674 9am to 5pm weekdays.
If your relative is going into residential or nursing care and is paying their own fees make sure that they are claiming all the benefits to which they are entitled. Benefits such as attendance allowance are not means tested.
People who were already permanently living in private or voluntary residential or nursing homes with four or more residents before 1 April l993 have preserved rights to higher levels of income support to help meet the fees for as long as they remain in care. If they are not already claiming higher levels of income support they will become eligible to do so once their savings and capital are reduced to a certain amount (£16,000 in l997). Any other income, such as income from benefits, will be taken into account. They retain these preserved rights if they move to a different residential or nursing home. The benefits agency (DSS) is responsible for paying income support. Make sure your relative claims, or that you claim on their behalf, from the benefits agency in the area where the home is situated. Don't delay as your relative may lose benefit.
Anyone entering a residential or nursing home after 1 April 1993 who requires financial help has to be assessed by their local authority first. Local authorities are responsible for paying for residential or nursing care for those people who are eligible for financial help.
If a person is assessed as needing residential or nursing care they will be means tested to determine how much they can contribute towards the cost from capital and savings or other income such as benefits. They will be expected to claim all the benefits to which they are entitled.
Carers should ask for an assessment if their relative can pay the fees now but may need help in the future. Otherwise they might find that their relative is unable to afford to remain in their chosen home.
People with capital or savings of more than £16,000 will be expected to meet the full cost of their fees whether they entered a home before or after 1 April l993. Once their capital and savings are reduced to £16,000 or less, they become eligible for help either through higher levels of income support or through the local authority, providing they have been assessed as needing residential or nursing care.
Savings of between £16,000 and £10,000 will be taken into account in assessing the person's own contribution to the cost of care. The person's husband or wife may be asked to contribute towards the cost of care. If you are in this situation you may wish to consult a citizens advice bureau or take legal advice. The Alzheimer's Disease Society can give you a list of solicitors who specialise in such matters.
Capital may include the value of the family home unless it is occupied by the person's spouse, or someone they live with as though married, or by a relative who is either aged 60 or over or who is disabled. If someone lives in the family home who does not fit into these categories, the local authority can be asked to use their discretionary powers to ignore the value. The DSS does not have this power.
Most benefits that your relative receives are taken into account when calculating the contribution needed from higher levels of income support or from the local authority. However, money intended for personal spending from April 1998 set at £14.45 per week is not included in this calculation. Benefits such as the disability living allowance mobility component do go straight to the person claiming while others such as the war disablement pension are paid in part.
Until recently some hospitals were able to provide free continuing NHS care for a number of people with severe dementia. However many hospitals have now closed long-stay wards. Some patients have been transferred to free NHS nursing homes and in some circumstances health authorities may buy places for NHS inpatients in private nursing homes. In these cases, people still count as NHS patients and the place is free to them although their state pensions and benefits may reduce as they do for other NHS patients who are in hospital a long time.
However, most people with severe dementia will either be discharged to their own or a carer's home, or to a residential or nursing home funded by social services or by the person or their family. If they are discharged home, support should be provided by health and social services but the extent of this support will vary in different areas.
The Department of Health issued new guidance to health authorities in February 1995 which covers hospital discharge arrangements for people with dementia. It makes it clear that patients who need intensive support should have an assessment of their needs before a decision on discharge is taken. An assessment should involve staff from health, social services and other agencies and the views of the patient, family or carer should be taken into account.
The final decision on whether the patient should continue to receive NHS inpatient care in a hospital or nursing home or be discharged elsewhere rests with the hospital consultant who must decide whether a patient meets their health authority criteria for NHS inpatient care. Each health authority sets its own criteria for this and other NHS continuing care services. Although these are based on guidelines, the criteria may vary from area.
Patients, their families and carers should be kept fully informed in writing about the procedures for assessment and discharge, the options available and their likely costs, and any details of care arranged.
If a person is assessed as not requiring NHS continuing inpatient care they do not have the right to occupy a bed indefinitely. However, they do have the right to refuse to be discharged from NHS care into a residential or nursing home towards which they may have to pay. In such instances social services should work with hospital and community-based staff and the patient and family or carer to explore alternative options. If all options are rejected the patient may be discharged to their own home or to alternative accommodation. Support should then be provided by health and social services. Seek advice.
If a consultant decides that an NHS hospital patient is not eligible for continuing NHS inpatient care, the patient, family or carer can ask the health authority where the patient is normally resident to look again at the decision. They should reply within two weeks in writing giving an explanation for the decision. During this time the person should not be discharged from NHS care. If you have problems in getting a review contact the Alzheimer's Disease Society or Age Concern England. You can also use the existing NHS complaints procedure.
Helpful factsheets are available from:
Age Concern England
Astral House England
l268 London Road
London SWl6 4ER
0l8l 679 8000
Counsel and Care
Twyman House
16 Bonny Street
London NWl 9PGt
0l7l 485 l566 (l0.30am-4pm)
We are grateful to Age Concern England for help in writing this information sheet.
November 1997
Page Text supplied by The Alzheimer's Disease Society of Great Britain