From country to country there is wide variation in the provision of care for people with dementia and their caregivers. In many countries there will be little or no care outside the family. However, wherever you live, there are some basic things that caregivers need.
These are:
medical help with diagnosis and care
help with the task of caring
rests (breaks, respite) from caring
regular health checks for you the caregiver
information about home care, day centre, or nursing home care
In some countries, you can get help and support for the day-to-day tasks of caring. There is a wide range of support and information available, so do not be afraid to ask. Remember you are not alone.
The topics you will find here cover:
sources of help and information
community care
day care
respite care
nursing and residential homes
choosing a home
questions to ask a home
making the move
Sources of help and information
"It is worth looking for help, even though it may seem hard to find."
There are many people and organisations in both the voluntary and professional sectors to make caring easier for you. The main contacts who can help you find support include:
the doctor in charge of the person with dementia
local social services
your national Alzheimer's association
National Alzheimer associations often have local branches, who can inform you about the services available in your area. The societies may comprise of fellow caregivers. These people will understand your needs, fears and concerns, and can be an invaluable source of information and support. A list of national Alzheimer's associations is available.
Opportunities also exist for caregivers to learn about dementia, and how to care for someone with dementia. Local groups often have speakers and run practical sessions on caring. It is also possible that more formal courses are organised at both regional and national levels. Consider attending these courses, as they will help you cope with the needs of someone with dementia.
Community care
"Getting help at home may allow you both to keep your independence."
Community care is a general term for services provided to help people with an illness or disability continue living in their own homes. In some countries there are a number of different services designed to support people in their own homes, however these will vary from country to country.
To obtain hospital services in the community, you need to contact the person's doctor or specialist. They will then detail the help available to you, and how to get it. For other services, you may need to contact your local social services department.
If you are the main caregiver, and you share your house with the person with dementia, or spend a large proportion of your time looking after them, there maybe help you can get too. It is worth contacting the person's doctor or local dementia support group for more information.
Day care
"Day care allows you to continue looking after the person while also giving you time to yourself."
If you are unable to look after someone with dementia all the time, for example during the day when you have to work, you may consider using day care centres. These provide care facilities when you need time to yourself regularly.
Respite care
"Respite care can give you some time to yourself."
Respite care means having someone look after the person with dementia, while you have a break from the responsibility of caring. It is important that you are able to get rest as a caregiver. You will not be able to look after someone with dementia if you are not fit yourself - this means having time-off.
Respite care takes a number of forms. Usually, the person goes into hospital or a nursing home for a week or two. In other cases, a caregiver will come to your home and look after the person, while you take a break.
Where nursing homes offer respite services, consider using these to see if the person might consider staying there when the time comes to move them to a home.
Nursing and residential homes
"Ease the pain of putting the person you care about into someone else's care by choosing an appropriate home."
Making the choice to move someone you care deeply about into a nursing or residential home is one of the most difficult choices you will have to make. Yet the move can be made easier if you take time to select the right home.
The main difference between nursing and residential homes is that residential homes look after people who are more active and alert. Nursing homes generally have a greater number of registered nurses on their staff in order to provide 24-hour nursing care.
Choosing a home
"Make sure the home you choose has both the right level of care and type of atmosphere to suit the person."
When choosing a home, you first need to check that the home can care for someone with dementia. Get as much information about homes from the person's doctor, social services and local dementia support group.
Once you have a list of home's names and numbers, call and make appointments to visit as many as possible. Ask questions and, from your visits, select a shortlist of homes that you think will provide the right level of care, with the right atmosphere to suit the person.
Then visit all the homes on the short-list, taking the person with you. If the home offers respite care services, see if the person can stay there, to find out if they will be happy there.
The whole process can take a long time and be very painful. However it is important that you spend time to make the right choice. In the long-term, this will make life more comfortable for the person and help you feel better about the move.
Questions to ask a home
"Asking questions will help you choose the right home for the person with dementia."
This is a list of questions that you might consider asking when looking for a home. Ask yourself:
where is the home situated? Will it be easy for friends and family to visit?
is the home friendly, welcoming and homely?
is it well furnished?
is it clean and sweet smelling? There should be no smell of urine.
do the staff treat people with tact and respect when helping them with bathing or visiting the toilet?
are there activities going on? How are chairs arranged? Is the television just left on all day?
Ask the nursing home:
are there places to get out to? Are outings arranged?
is there a safe garden to walk in?
are there enough rooms for residents to sit in?
what is the home's practice about smoking?
is there access for wheelchairs or walking frames? Are the toilets and baths suitably adapted?
are single rooms available?
can you take the person's own furniture and other possessions?
can residents use their own rooms to be private, and do the staff respect their need for privacy?
will they have their own toilet? Are there enough toilets and bathrooms for all the residents?
what is the food like? Is the food prepared at the home appealing and nutritious? Are choices offered at mealtimes? Are special diets catered for?
will the person be able to eat in their own room if he/she wishes?
will he/she be able to eat at a different time, or have a snack, just like at home?
what are the arrangements for medical care?
are dental treatment and chiropody available?
Making the move
"Make the move easier by continuing to care for the person after they have moved into the home."
Good planning and preparation is the best way of reducing stress around the move. Guilt is often a key factor in making the move, so it is important that you recognise this feeling for what it is. Do not forget that you are doing this for their benefit, as well as yours and your family's. Nothing you do will change the outcome of dementia, so all you can do now is make sure that the person is comfortable, safe and reasonably content.
Your role as a caregiver does not need to stop here. You can continue to provide the person with your care by visiting them regularly and helping at mealtimes and with baths. This will make the whole transfer less traumatic for you both.
Where next?
Living and caring for a person with dementia
Find your local Alzheimer association
Help for carers
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