Many people worry that a diagnosis of dementia will mean that at some point they will need to be cared for in a care home. Most people will feel that it is very important to be able to stay in their own home to maintain relationships with friends and family and social activities, and to avoid having to get used to a different environment and way of life, which can, in itself, be very difficult for someone with dementia to adapt to.
So to maximise the possibility of staying in your home even if your dementia causes you severe problems with your daily activities and needs, you could begin thinking about the issues involved as early as you can.
How suitable will your current home be?
- Are you already finding your home too large to take care of? How easy do you feel it will be to maintain it if you become less skilled / interested in household chores? If your partner / family member spends time caring for you, will they also be able to maintain the house?
- Will your home’s design cause you any problems? Does it have many different levels? Would you have sufficient downstairs space for sleeping and bathing if going upstairs proves to be a problem?
- Will the location be suitable? Do you currently live in a rural area where access to social activity and contact with family and services might be difficult? Is your home on a very busy road that might pose risks to you going about independently?
None of these issues mean that you will HAVE TO move to a Care Home, as there are organisations that can help or actions you can take:
- If your home needs to be adapted in any way, the Adult Social Services Department can help you with this. An Occupational Therapist can carry out an assessment of any problems you are encountering in your home, getting about, using the facilities, staying safe and can offer advice about how they can be resolved. This might include arranging for a Disabled Facilities Grant from the Council, or advising you about raising capital against the value of your home, putting you in touch with a home improvement agency, helping you draw up plans and / or overseeing any building work that needs to be undertaken. The Occupational Therapist will also be able to advise you about any aids to daily living that can help you be more independent in your home, including technical and electronic gadgets that are increasingly becoming available to assist people in staying safe and maintaining their activities such as medication reminders and gas leak alarms.
- You can contact Home Improvement Agencies directly yourself as they operate independently of Adult Service Departments and are able to help people even if they are not eligible for help from Adult Services.
- You could think about moving to more suitable accommodation in advance of experiencing any difficulties e.g. if you already live alone, you might consider moving closer to your family, or perhaps to a housing with care scheme so you will have access to a range of activities and to support as you need it.
Will you be able to receive all the support you need?
- Are you currently living alone? Do you have family or friends who you feel will be able to become carers?
- Is your partner in good health? Do they have work / other family commitments? Have you discussed with your family who will provide your care as you need it?
There is no doubt that many people with dementia will increasingly need more support and care over time, and that family and friends will need to have support themselves to ensure the arrangements can continue as long as possible. The type of additional support will be unique to each person’s circumstances, but is likely to include personal care, housework, support with activities of daily living, social activities, breaks for the person and the carer, emotional support, medication and medical reviews, information and advice and so on.
When you identify the need for additional support
- You should first discuss this with any professional or service you are already in touch with. Most people will at least be in contact with their GP, and may also be in contact with voluntary services or support groups. Whomever you tell, should be able to advise you whether they can help you further or whether you need the help of another agency.
- For most types of help that people with dementia might need or their carers, to stay at home, Adult Services of local councils are responsible for carrying out assessments and arranging services ( See Factsheet 'Getting Help From Adult Services Departments').
- If your needs become primarily for health care, local health services will take responsibility for supporting you and your carers, but most people are likely to need a combination of health and social care support most of the time.
- You can, of course, identify and arrange appropriate support yourself. This will involve getting information about what is available, from friends, libraries, websites, health and social care practitioners, voluntary organisations, information agencies etc and contacting organisations such as private home care or housework agencies yourself. The Care Quality Commission is the regulator of care services and reports of its assessments and inspections of services can be found at www.cqc.org.uk/findcareservices.cfm
Funding your care at home
There is a range of benefits that people with dementia or their carers can claim. Some are only available to people on low incomes and /or on having made national insurance contributions, but others are based only on the need of the person, such as Disability Living Allowance (for people under 65years) and Attendance Allowance (for people aged over 65years) which provide funds for the extra help that someone needs as a result of their disability.
There is also a carer’s allowance for those who care for someone for more than 35 hours a week.
There are also benefits that are not specific to having dementia or a disability but relate to the person’s income or age.
More information can be obtained from www.direct.gov.uk, or from local social security offices, advice services or voluntary organisations.
Care arranged through Adult Services Departments
The assessment of needs carried out by the Adult Services Department is free, but all Councils will have a charging policy for any services they arrange for you. The charges will always be based on your income and savings, and in some cases, will vary according to the amount and type of service you receive. If your income / savings are below a certain threshold, you may get your services free, although you may be expected to claim for and contribute Disability Living Allowance/ Attendance Allowance. There is normally also an upper threshold that would mean that you could pay full charge for the services. As each Council is able to decide on its own Charging Policy, you should contact your local council for information or a local voluntary organisation or advice service.
In determining the charge only the finances of the person receiving the service should be taken into account. Increasingly Councils are offering people the chance to have a cash allocation to arrange their own services, (See Factsheet : Personal Budgets and Being in Control). The amount you receive will still take account of the charge you will be assessed to make.
Independent Living Fund
This Fund can give financial help to pay for personal and domestic care that enables severely disabled people to live at home. It is generally only available to people under the age of 65 years and it can only be accessed by a application from the Adult Services Department.
Continuing Healthcare Funding
All NHS care should be provided free. However when people have ongoing difficulties, it can sometimes be hard to know whether these are really health care needs or social care needs, and social care services are means-tested. As such, the Government introduced a national framework for assessing continuing healthcare needs so that there could be clarity about whether a person has 'a primary health need' and should be getting their care free of charge.
Although this can be a complex matter, please do not be put off trying to get continuing healthcare funding if you feel it is appropriate. The publication above contains a letter of appeal that you can use if you are not granted the funding at the first assessment.
It is possible to be in receipt of social care services and health services at the same time, but only the first should be subject to any charges.
Occasionally there are charitable organisations that have funds specifically to help people in need. They may relate to people who have previously worked within a particular industry or have a particular type of need. The Charities Digest 2010 (ISBN: 978-1-85783-115-3) contains information on over 5000 regional and national charities as well as over 2,000 voluntary and independent organisations.
Guideposts Trust provides specialist information and care services for people with dementia and their carers. www.dementiaweb.org.uk
Contact the Helpline number: 0845 4379901 available Monday to Friday office hours, answer service at other times or by email at firstname.lastname@example.org
© Guideposts Trust Ltd. Registered Charity no. 272619 – not to be
reproduced without prior permission