People with dementia require the help of a family caregiver or professional care. Of the two, a family caregiver is the better choice: A person with dementia does best in his or her own home. The familiarity, security, and comfort of one’s own home may slow the progress of dementia in some people.
One of the most important aspects of caring for a person with dementia is getting support. This support can come in the form of family members, close friends, formal and informal dementia support groups, visiting nurses, and in the later stages hospice care.
Dementia Support Groups
Most support groups are designed for the caregiver, however participation in a support group can also be helpful to the early-stage dementia patient. Dementia support groups generally provide information about the disease, education and practical support. A support group is also an excellent forum for learning how other people have coped with the symptoms of dementia and the life changes the disease causes.
Dementia support groups are often held at local treatment centers, hospitals, universities, research centers or churches.
Starting a Support Group
If you live in a community that does not have an established dementia support program, talk with your doctor about forming one. Dementia is a common condition, so others in your community are bound to participate.
Follow these steps to get a support group started:
- Research a venue. Does a local hospital, clinic or doctor’s office have a meeting room that they can provide free of charge on a monthly basis? If not, is someone’s home available?
- Recruit a leader. The best dementia support groups are lead by someone “in the know.” Is your doctor willing to lead? If not, can he or she provide the name of others that might be interested.
- Determine the best size of your group. A small group may seem intimate, but may not provide the range of experience that a larger group might. An overly large group, on the other hand, may get out of hand. A larger group can be split into two groups, if your venue will provide the space for two meetings.
- Recruit members. Talk with your doctor about providing flyers to the caregivers of other dementia patients. See if you can post flyers in your local library.
- Recruit speakers. Schedule an occasional talk or presentation by a dementia specialist who is also willing to answer questions. Advertise the presentation if you would like to recruit additional members.
- Share the responsibility. Managing a support group can be a challenge. Talk with other members about sharing the duties. This will provide you with some relief, but will also allow others to take an active role in the group and prevent drop out.
- Encourage member participation. Maintain a suggestion box and implement member suggestions.
Caregiver Suggestions and Respite Care
Ideally, the caregiver should allow the individual as much independence as possible. This may involve using calendars, making lists, and reminding the individual about daily tasks, while letting the individual perform as much self-care as is possible. The caregiver should also try to keep spontaneity to a minimum, as dementia patients seem to fare better when following a regular routine.
Caregivers often feel guilty, angry, and burned-out from the stress of caregiving. Over time, caregivers may need treatment for depression and stress management. A balance needs to be struck between the needs of the patient and the caregiver. Respite care can help maintain this balance.
Respite care is professional care that allows the caregiver some valuable time to relieve stress, relax, and recover from the duties of caregiving. Ideally, respite care is provided in the home, so the patient doesn’t have to adapt to unfamiliar surroundings.
A Safe Return Home
Dementia patients may roam and are often unable to remember where they live. To prevent your dependent from becoming lost, consider giving him or her an ID bracelet to wear at all times. This will insure a safe return home.
Dementia and Elder Law
One of the most difficult aspects of caregiving is preparing for the patient’s death. A lawyer who specializes in elder law can provide the support and information you need about durable power of attorney for both health and finances, advance directives, long term care financing, estate planning and will preparation. In some cases, workshops are provided free of charge to dementia caregivers.
Alzheimer’s Disease and Related Disorders Association. (1995). Respite care guide: How to find what’s right for you [PF112Z, reprinted 2002].
American Academy of Family Physicians. (reviewed 2003). Dementia: Info and advice for caregivers. AAFP handout.
Pauw, I. (nd). Guidelines on how to start your own support group. Health24.