Support or "self-help" groups are formed by people who share common concerns. The groups may be participant-initiated or sponsored by a health care institution, social services agency or nonprofit organization.
A degenerative or terminal illness, or an accident involving a family member, is a traumatic experience for spouse, parents, children and other relatives. Support groups allow those facing the difficult task of daily caregiving to benefit from interaction and support from other people in similar situations.
In recent years, much energy has been put into genetic research both through the individual efforts of interested scientists and through the collaboration of international teams in the Human Genome Project. Through this work, we have learned a great deal about how genes function and how they can cause certain problems. We now know how to look for mutations (changes in the gene) that can lead to specific disorders. Genetic testing is possible for some conditions because we can recognize the difference between a normal gene and a disease gene.
Hardly a day goes by without a story on television, in the newspaper, or on the Internet about new medical research findings. You might hear about a new drug to treat Alzheimer’s, a promising “cure” for cancer, or a breakthrough discovery in Parkinson’s disease. Or you might see articles about particular foods or dietary supplements that are said to promote health or prevent or slow the course of illness. Should you try to get these drugs for a family member who is sick? Should the person change his diet? Take more vitamins?
The best everyday care choices for the person diagnosed with a dementing illness, and for loved ones giving care, depend on an understanding of values and care preferences. Examples of everyday care choices include when to stop driving, how to manage money, whether to purchase or use support services, when to accept care from family members and, at a more personal level, when to bathe and what activities to do.
When an individual is diagnosed with dementia, one of the first concerns that families and caregivers face is whether or not that person should drive. A diagnosis of dementia may not mean that a person can no longer drive safely. In the early stages of dementia, some – though not all – individuals may still possess skills necessary for safe driving. Most dementia, however, is progressive, meaning that symptoms such as memory loss, visual-spatial disorientation, and decreased cognitive function will worsen over time.
I was 19 years old when my Mom was diagnosed with Metastatic Small Cell Lung Cancer, which had a low survival rate. I was in my second semester of college so the idea of caregiving was not exactly making sense to me. Who is a caregiver at the age of 20? That’s for older people!