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Parkinson Disease Dementia (cont.)

Support Groups and Counseling

If you are a person newly diagnosed with PD, you know that your disease has changed your life drastically. Not only are you losing some of your physical abilities, but you may be starting to lose some of your mental abilities as well. You worry about how long you will be able to continue enjoying relationships with family and friends, activities you enjoy, and independence. You worry about how your family will cope with caring for you and themselves as your disease progresses. You may feel depressed, anxious, even angry and resentful. The best way to deal with these emotions is to express them in some way. For many people, talking about these feelings helps relieve them.

If you are a caregiver for a person with PD and dementia, you know that the disease tends to be more stressful for the family members than for the affected person. Caring for a person with PD and dementia can be very difficult. It affects every aspect of your life, including family relationships, work, financial status, social life, and physical and mental health. You may feel unable to cope with the demands of caring for a dependent, difficult relative. Besides the sadness of seeing the effects of your loved one’s disease, you may feel frustrated, overwhelmed, resentful, and angry. These feelings may in turn leave you feeling guilty, ashamed, and anxious. Depression is not uncommon.

Different people have different thresholds for tolerating these challenges.

For many people with PD, talking to a close friend or family member may be helpful. For others, talking to a professional counselor or member of clergy is comforting.
For caregivers, just “venting” or talking about the frustrations of caregiving can be enormously helpful. Others need more, but may feel uneasy about asking for the help they need. One thing is certain, though: if the caregiver is given no relief, he or she can burn out, develop his or her own mental and physical problems, and become unable to care for the person with PD.

This is why support groups were invented. Support groups are groups of people who have lived through the same difficult experiences and want to help themselves and others by sharing coping strategies. Mental health professionals strongly recommend that affected persons, to the extent they are able, and family caregivers take part in support groups.

In diseases involving dementia, it is mainly the caregivers who are helped by support groups. Support groups serve a number of different purposes for caregivers:

The group allows the person to express his or her true feelings in an accepting, nonjudgmental atmosphere.
The group’s shared experiences allow the caregiver to feel less alone and isolated.
The group can offer fresh ideas for coping with specific problems.
The group can introduce the caregiver to resources that may be able to provide some relief.
The group can give the caregiver the strength he or she needs to ask for help.

Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the following organizations. You can also ask a trusted member of your health care team, or go on the Internet. If you do not have access to the Internet, go to the public library.

For more information about support groups, contact these agencies: