Caring for a family member with Alzheimer?s can be so physically exhausting that many caregivers end up sick themselves.

That is one of the reasons Orien Reid-Nix, a visiting American health advocate, is urging Bermudian caregivers not to go it alone, but to seek support from the community before it is too late.

Mrs. Reid-Nix, Chairperson of Alzheimer?s Disease International (ADI), was on the island to visit with the Alzheimer?s Support Group of Bermuda which recently became a member of ADI.

The support group was formed in 1989. Its purpose is to provide emotional support, education and information to family members and friends of those with Alzheimer?s Disease and related disorders.

Although the group was organised around the needs of families with residents on the Extended Care Unit, community-based caretakers have always been welcome and actively involved.

?The Bermuda Family Alzheimer?s Support Group is a vital organisation for people living with this disease,? said Mrs. Reid-Nix. ?I am particularly concerned about caregivers. The average caregiver is female and she may spend 69 hours a week with the patient. Caregivers are more prone to depression.

?A percentage of caregivers will die before the patient simply because of the stress. Caring for someone with Alzheimer?s is a 24/7 job. It is emotionally stressful. It is financially stressful. It is spiritually stressful.?

Mrs. Reid-Nix estimated that there are around 300 people in Bermuda with Alzheimer?s Disease. She said organisations like The Alzheimer?s Support Group of Bermuda give families a chance to talk to others in a similar situation, to find out the latest research on Alzheimer?s, and to learn techniques for managing loved ones with the disease.

?Caregivers need to come out and avail themselves of the help of a support group, and they need to stop hiding their loved one,? Mrs. Reid-Nix said. ?This is a disease that carries with it a stigma.

?People often think it is something ?mental?. It is not mental, it is a memory loss. The person with Alzheimer?s is not crazy; they have a disease. What makes it so difficult is that the person can look OK.?

She said it may seem selfish for a caregiver to take care of themselves first, but it is a way to ensure that they continue to be around to care for the patient.

?That is something that is very hard for caregivers to learn,? she said. ?Taking care of yourself means you are around to take care of your loved one.

?Take regular breaks, and don?t be afraid to call for help. This is a disease that really does isolate you. That is one of the things that frightens me about what is happening here in Bermuda.?

She said more local caregivers need to take advantage of the services that the Alzheimer?s Support Group of Bermuda offers. She said the group isn?t seeing the majority of the families out there asking for information or taking part in meetings.

?I visited the Alzheimer?s Unit in the old wing of the hospital while I was in Bermuda,? she said. ?It was a story I have heard too often, in the US and around the world.

?By the time the person gets to the continuing care unit at the hospital, they are in the latter stages of the disease. Families are not reaching out; they are taking care of their own, but this is not a disease that you can take care of by yourself.?

She said caregivers aren?t doing their loved ones a favour by not getting the diagnosis as soon as possible, because the earlier a diagnosis is made, the sooner medication can be started.

?There are a number of medications out there now that can slow the progression of the disease,? she said. ?They work with a number of people. These medications are not without their side effects, but at least it is an opportunity to try one of the four medications.?

She said that although the medications don?t cure the disease they can improve the quality of life of the patient.

?They don?t go down as quickly,? she said. ?So people can stay at one stage for a longer period of time, and be more independent for longer.

?If you don?t get them diagnosed right away, they may miss the window of opportunity. You can?t start the drugs when y get later into the disease.?

Mrs. Orien-Nix lives just outside Philadelphia. She has had a number of different careers. She has been a clinical social worker, and a television consumer reporter.

In 1998 she retired from broadcasting to set up her own business, The Consumer Connection. Her sole client is the Wakefern Food Corporation, which supplies Shoprite products to the MarketPlace supermarkets.

She became involved in volunteering with Alzheimer?s 15 years ago because both her mother and grandmother had the disease. She took care of her mother for almost four years.

?In my mother?s case the first sign, for me, that something was wrong was that she was not able to remember recipes,? said Mrs. Orien-Nix. ?She taught me how to cook and she couldn?t remember how to cook a pot-roast.

?People in the early stages often try to hide it,? said Mrs. Orien-Nix. ?I think sometimes they know something is wrong and they are afraid.

?It must be pretty frightening to realise you can no longer depend on your own brain.?

Sadly, her stepfather died not long after her mother was diagnosed with Alzheimer?s.

?My stepfather was about ten years older than my mother,? she said. ?So he was in his early 80s when she was diagnosed. She was 72. I think in his own mind she was supposed to take care of him and not the other way around.

?A year into her disease he was diagnosed with pancreatic cancer and five months later he was dead. I first took care of my mother long distance and then brought her from Atlanta to Philadelphia to live with me.?

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