After diagnosis - What next?
"I had read a lot about dementia but didn’t know whether there were any services I could benefit from. I finally contacted my local Alzheimer Association and they gave me a lot of information and advice about access to services and different forms of support." (David)
"I’m really pleased about the meals on wheels service. I’ve got the hang of cooking but it’s nice not to have to do it every day. Also, I can spend more time with Freda and less time in the kitchen." (Frank)
Various services exist to help people with dementia and their carers. However, the same services are not available in every country and/or area. Furthermore, you may find that some services are financed by the government whereas for others you have to pay. Fortunately, there are also a number of voluntary organisations which provide certain services free of charge. For this reason, it is worthwhile contacting your local Alzheimer’s association in order to find out more about this. Below you will find a summary of some services which you may find helpful.
Alzheimer associations are a service in themselves. They provide information and advice about dementia and services. Many also offer support to people with dementia and carers through support groups, help-lines, training and legal advice. The exact kind of services proposed depends to some extent on each organisation’s resources. Some are run mainly by volunteers whereas others have paid staff. However, even with limited financial resources and a small number of volunteer staff, many organisations manage to provide a very valuable service. They may also be able to provide or recommend counsellors and/or benefit advisors.
Help lines provide an opportunity to obtain information and support without leaving the home. This can be very useful for people who have difficulty getting out or who have no transport. Some are run on a 24 hour basis which means that they can be contacted precisely when help or support is needed. Help-line operators can provide information or provide you with the contact details of someone else who can. They are usually good listeners too and are often contacted by people who just need someone to talk to when they are feeling down. Very often, the operators have had personal experience of caring for someone with dementia.
Legal advice may be important when it comes to financial or guardianship issues. As not all lawyers are necessarily knowledgeable about these issues, it is advisable to check with your Alzheimer association to see whether they can recommend someone. They may also be able to provide you with a brochure covering the main legal issues. Some associations have lawyers who give free advice to carers and people with dementia.
You may be entitled to certain benefits and allowances, either now or at some time in the future. It is worthwhile finding out what you, as a carer or person with dementia, are entitled to as soon as possible so that you can plan better for the future.
“Meals on wheels” is a service which involves the delivery of hot meals to people’s homes. Usually, the service caters for special health-related and/or religious dietary requirements. This can be helpful for people who are not (or are no longer) able to prepare nutritious meals for themselves. It can also help carers by giving them more free time and also if they cannot get out regularly to buy food.
Respite care (or “short breaks”) is a service which is designed to give carers a break from caring, but attention must be paid to ensure that respite is not detrimental to the well-being of the person with dementia. This might involve the person with dementia spending some time in an establishment, in a temporary carer’s home or alternatively, someone coming into their home. Respite care can be organised for a short period of time (e.g. a night, a few days or a week) or on a regular basis (e.g. every Wednesday afternoon, two evenings a week etc.). It is a good idea to inspect the home or establishment in advance in order to ensure that it is suitable and to avoid future disappointments. At the same time, you should ask for clear commitments as to what will be offered and supplied.
Home care assistance covers a range of different services. Depending on a person’s needs, they may for example receive assistance to get dressed, to get in and out of bed, to ensure that tablets are taken, to have a bath or to get a little bit of exercise.
People with dementia and/or carers may be entitled to home help (e.g. help with housework or shopping). This usually involves someone coming to a person’s home on a regular basis and taking care of a number of tasks (cleaning rooms, putting out the bins, washing clothes, ironing etc.). Alternatively, the person with dementia or the carer might be taken shopping.
Day care centres provide an opportunity for people with dementia to spend the day in a protected environment, to enjoy the company of others and/or to occasionally take part in stimulating activities. Spending the day at a centre is also likely to include having a nutritious meal. Some people attend day care centres on a daily basis, whereas others attend once or a few times a week.
The needs of younger people with dementia differ somewhat from those of older people with dementia. They may, for example, be in paid employment, have children still living at home and have mortgages. Activities offered in day care centres are often more orientated towards older people and do not correspond to the interests, age and outlook of younger people. However, service providers are slowly realising this and in some areas, services that are specifically geared towards the needs of younger people with dementia can be found.
Last Updated: Friday 11 September 2009