To help you to navigate your way through some of the difficulties that you might face, we have prepared a set of questions that somebody who wants to care for their loved one at home might ask.
Where we can, we have supplied answers – or suggestions about getting more information or further help.
This section also tells you about some of the people that you might like to contact for help, with some examples of questions you might like to ask them.
“I do not want Mum to go into hospital or a care home so, what services are available to enable me to care for Mum at home?”
“Is there a specialist service that would help Mum?”
(There may be specialist old age psychiatry teams, either based at a hospital or available to visit you at home) .
“What drugs are there to help now”
“What nursing services are available to help me look after Mum?”
“What continence aids are available to me to use here at home for Mum? ”
(There may be a choice of commodes; bottles; bedpans; continence pads and sheets- all of which should be free. Kylie sheets for use in bed are unlikely to be free)
“What are they?”
“How do I get hold of them?”
” How soon can I get them?”
(Sometimes there may be a delay of several weeks; you may have to buy some aids privately. Many local pharmacies sell small aids and incontinence wear over the counter and an increasing number of supermarkets sell incontinence wear and pads).
“Is there a laundry service?”
(There may be one of these; if so it should be free)
“How do I dispose of the laundry after use? ”
“Is there a collection service? If so, how do I access it?”
(There may be a collection service, which should be free).
“Who do I ring if I want more supplies or if I have a problem about them?”
(Try to get the NAME of a person you can ring).
“How do I get help with washing/bathing Mum?”
(Bath aids may be available and could include bath seats, hoists, showers. These may be provided by district nursing teams, or by social services. District nursing services are free. There may be a charge for care via social services. If there is likely to be a long delay in obtaining aids the Red Cross does provide short term loans including wheelchairs. Look in the local library or phone book for your nearest branch Private companies and some charities such as PARKINSON’S UK and Age UK have catalogues of aids they sell by phone or online).
“Who do I contact about this? ”
(Try to get the NAME of a person you can ring).
Mobility: Aids and Appliances
“What help is there to enable me to lift Mum?;help Mum out of a chair?; help Mum On /off the toilet ?”
“Mum needs help to walk. What help is there available? How quickly can I get this?”
“Who do I contact about this?”
(Try to get the NAME of a person you can ring. Aids may include walking frames; rollators (type of walking frame on wheels); wheelchairs; chair raisers (raise height of the armchair); bed raisers (raise the height of the bed); backrests; hospital bed (adjust for height and sitting up/lying down in bed); toilet frames/raised toilet seats (raised height of toilet seat);washable slippers/shoes; ripple mattress.
There is also a range of more specialist assistive technology aids available.You could contact the Occupational Therapists at local Social Services for specialist advice).
Benefits, Care Provision, Allowances and Funding.
Please note that benefit rates change over time, and we do advise that you always check your entitlements with an appropriately qualified person. Because we are a small charity run entirely by volunteers we are directing you to appropriate sources who have paid staff to keep information on benefits, allowances and funding up to date.
There are benefits that you as a person with dementia or you as a carer are entitled to if you meet certain criteria. Because these criteria vary according to the type of benefit it is essential that you always seek information and advice before claiming to make sure you get the benefit most appropriate to you.
A social worker or your local Citizens Advice Bureau (CAB) is a good starting point. National CAB can be found at www.citizensadvice.org.uk and they also have an on-line service which can be found at www.adviceguide.org.uk. Trained CAB advisers offer information on benefits. To find your local CAB look in your local telephone book or ask at the library.
Age UK and Alzheimer’s Society both provide advice and fact sheets. National Age UK can be found at www.ageuk.org.uk and they have a line for general enquiries 0800 169 8787 where you can find out where your local branch is located. They also have an advice line 0800 169 6565.
Alzheimer’s Society can be found at www.alzheimers.org.uk and they provide many information leaflets relating to care,benefits, allowances and funding – go to www.alzheimers.org.uk/factsheets or phone 0300 303 5933.
Local Authority Social Services Departments are responsible for assessing the needs of people who may need care services to enable them to continue to live at home. Each Local Authority has its own assessment procedure and the Social Services Department will publish information on how to apply, what kinds of services could be provided and who is eligible to receive those services.
You will be able to get the information from your Social Services Department or your local library. On line, GOV.UK is the official guide to information on central and local services. It can be found at www.gov.uk then go the ‘Benefits’ heading. This has a sub-heading ‘Carers and disability benefits’ and under this you will find a section on Attendance Allowance and another on Carers Allowance.
Returning to the ‘Benefits’ heading there is another sub-heading, ‘Benefits Entitlements’ and under this you will find a ‘Benefits Calculator’ which will help you to see which benefits you may be able to claim. There is also a section ‘Find out about changes in care and support’ which when you enter your postcode takes you to your local council website which outlines the services they provide and the eligibility criteria they use. Each Local Authority has its own criteria for deciding who is eligible for assessment and compares applicant’s needs against those criteria.
The assessment is carried out in your own home usually by someone from social services who may request extra information from other professionals such as your GP, consultant or community nurse.
The assessment involves looking at your needs and circumstances and assessing your finances as the local authority can charge for the services it arranges if you are able to contribute towards the cost. The amount charged will vary according to the local authority but charges are meant to be ‘reasonable’.
The kinds of services that you may find helpful are meals on wheels, home care and day care. When the assessment has been completed a ‘care plan’ is written which describes the services which you should be provided with, who will provide them and when they will begin.
You will be given a copy of the plan and the name and contact details of your care manager who is responsible for seeing that the services are delivered. You may have to wait for services to begin or some may start and others follow later.
Services may be provided directly by social services or arranged through other agencies such as health or housing departments, or voluntary or private organisations.
Home care workers can help with personal care if you are having difficulty in washing and dressing for example or they may prepare simple meals.
Day care may be available locally in the form of day care centres or drop in centres and provide social activities and a meal. Transport to and from these centres is often provided. You may also be put in touch with centres run by local groups or charities.
If you have a problem with a council service you should first complain to the council. If you are not satisfied with the result the Local Government Ombudsman Advice Team may be able to help. It is a free service which investigates complaints in a fair and independent way. They can be contacted on line at www.lgo.org.uk or by phoning 0300 061 0614 8.30. am to 5.0. pm Monday to Friday, or by writing to The Local Government Ombudsman, PO Box 4771, Coventry CV4 0EH
Hospices are increasingly offering services to people with dementia and their carers. Contact your local hospice to see what they provide. For instance, hospices have benefit advisers and many offer complementary therapies.