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SUPPORT SYSTEMS

Many expect that the most immediate source of support for someone caring for a loved one with Alzheimer's Disease would be family - immediate and extended. Inevitably, the question of who accepts the responsibility of primary caregiver must arise. Family needs and dynamics must be taken into consideration. Planning and discussion are important. Consider from the outset, the division of responsibilities. Who is going to take care of what? How will this impact on other family members - especially children and spouses?

The primary carer should consider whether they are prepared or able to shoulder the entire burden - or do they expect a spouse, siblings, children, and/or others to be willing to help? Take a close and realistic look at your own situation and capabilities. Avoid having unrealistic expectations of yourself and of other family members. Consider seeking advice and support from outside the family - right from the word go.

Carers will be able to cope with home care for longer if they avail themselves of the variety of community services provided. These can include

  • delivery of meals to the home (meals on wheels)
  • community nursing services
  • transport services
  • in-home respite
  • day respite centres
  • home help
These services may be provided by government or volunteer agencies. There are a number of possible sources of information about the availability and costs of such services that are worth exploring:

Alzheimer's Associations
Many areas have Alzheimer Associations which can provide valuable information and ongoing support. Services may include a phone hotline, personal counselling and educational literature and/or seminars. These associations will probably be able to answer questions and concerns and direct you to available services.

To find out if there is a national association in your area, there is a full listing of member countries with Alzheimer Associations affiliated to the international association.
Contact addresses for local area associations are also available for

Support Groups
A major source of practical information and advice is a support group. These are composed of fellow carers and/or fellow sufferers of the disease who meet and exchange ideas and experiences. Sharing the emotional side of illness and exchanging helpful advice can make it easier to face and to cope with problems. If you're caring for someone with Alzheimer's Disease, sharing experiences with other caregivers can help you recognize that feelings of resentment and grief are normal. Also, long-term group members often offer pearls of practical advice. These can help you adapt to the changes that a disease or disability imposes on your lifestyle. If you have an Alzheimer's Association in your country or state, they should be able to put you in touch with any existing local support groups. Your doctor or other community health professionals may also be able to help put you in contact with other carers.

The power of social support in Alzheimer's caregiving was clearly demonstrated in a study by researchers at the Ageing and Dementia Research Center of New York University Medical Center (Journal of the American Medical Association, Dec. 4, 1996). The study involved 120 spouse-caregivers in the New York area whose husbands or wives had been newly diagnosed with Alzheimer's Disease. About half were assigned to a control group, who received standard advice on managing home care. The other half were assigned to an intensive treatment group that included a weekly support group of spouse-caregivers. After three and a half years, those in the intensive treatment group proved more capable of coping with home care for a significantly longer period.

Government
Many governments provide financial and other supports for carers. Information about such support in Australia and New Zealand is now available on the internet. There is always an assessment process involved which will identify the level of support needed, so the appropriate local government centre or agency will need to be contacted. However, such sites do provide valuable information about the sort of benefits and support mechanisms that people may be eligible for.

Respite Care
There are a number of centres which offer temporary care for brief periods of time to give carers and their family a break. Sometimes it is possible to organise a regular schedule of respite care times. Some centres offer respite care to allow carers a long enough break to take a holiday. Your local doctor, Alzheimer Association or Community Health Care Centre may be able to provide contacts for local providers of respite care.

Community Health Centres
There are many services available from Community Health Centres. Some offer regular day groups for sufferers of Alzheimer's Disease and other diseases. Some will assist householders to provide the necessary modifications to the house to improve the safety and well-being of the patient (where to place grab rails; where to remove obstacles, improve lighting, provide visual clues etc).

Web sites
The internet is more than a source of information. It also offers you the opportunity to interact with others - share your concerns or experiences, ask questions of experts or other carers, communicate with others who understand a little of what you may be experiencing. This site has a Bulletin Board that allows you to post a message or questions to which others may respond. A similar Bulletin Board can be found on the alzheimer.com site which is an American-based site sponsored by Bayer. The Canadian Alzheimer Society page offers an "Ask the Expert" e-mail service. Another site which caters for a variety of dementia groups conducts a live chat line at set times. (dementia.ion.ucl.ac.uk)

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