Benefits for Caregivers of Individuals with Alzheimer’s Disease from a Community Based Recreation Program Tyler Tapps MS

Defining a “Caregiver” Anyone who provides assistance to someone else who needs help Family members and friends are the primary source of care for 75% of impaired older adults living in the community and 60% for those living in LTC facilities.

Who are Caregivers? Spouses – the largest group, Most are older with their own health problems Usually what gender? Daughters – 2nd largest, Called the “Sandwich generation,” many are married and raising their own children.

Who are Caregivers? Grandchildren Daughters-in-law – 3rd largest group. Sons – often focus on the financial, legal, and business aspects of caregiving Brothers and Sisters – often older Other – friends, neighbors, members of faith community

Profile of Alzheimer’s Disease Caregivers 70% of Alzheimer’s disease patients are cared for at home 4-5 million family members provide informal care to people with dementia 50% are 50+ years old 59% female 54% employed full-time This # is rising

Challenges faced by Caregivers Alzheimer’s disease typically lasts for 5-15 years Increasing cognitive and functional impairments lead to complete dependence Disease symptoms change over time Subjective Diagnosis in early stages Increase in anxiety and stress Being an advocate for a disease

Challenges faced by Caregivers Finding the time Finding proper social support Knowing who to converse with about the disease Finding care/support programs Knowing what proper care to give

Community Barriers Physicians’ reluctance to diagnose Patients and families unaware of basis for diagnosis Lack of services available Lack of funding Lack of Assessment*** Lack of Advocacy***

Caregiver Coping They may have many different feelings? sadness, anger, confusion, regret, fear. Remember these are all normal. Watching someone they love affected by this disease is hard. Adjusting to the changes and impact it has on their life is difficult. It helps us learn about the disease.

Support for Caregivers Caregivers must deal with changes in a loved one’s personality and provide constant attention for years. Thus, caregivers are especially vulnerable to physical and emotional stress

Programs for Caregivers Counseling sessions and ad hoc counseling Therapeutic based activities to incorporate both caregiver and patient Support group activity based programming Get multiple caregivers together Information and education referral Active programs encouraging advocacy

Programs for Caregivers Peer support programs can help link caregivers with trained volunteers. Other support programs can offer services geared to caregivers dealing with different stages of AD.

“Dual” activities Read stories or the newspaper to them. Play a simple game or do a puzzle. Look through old photographs. Listen to music. Some favorite tunes can prompt fond memories for both parties. Reminisce about the past. Caregivers deal with the loss process better by remembering the person at their best.

Positive Outcomes More widespread availability of counseling and support for family caregivers New and better interventions to help caregivers Adaptation of these interventions for caregivers of people with other diseases Promote advocacy for further care.

Support for Caregivers Technology and Caregiving The NIA is studying how computers can provide information and support to family caregivers through: computer-based bulletin boards chat rooms Q & A modules medical advice forums These features have become very popular among users because they reach many people at once, are private and convenient, and are available around the clock.

What Caregivers Forget Talk to guidance counselors, clergy, healthcare professional, friends, siblings or others that they trust. Tell them how they feel and what is happening. It is important to express their feelings. Ask questions. Sometimes family and caregivers, get very busy with caregiving responsibilities, and they may not realize what is happening with other family members.

Three Major Keys Utilize programs that incorporate caregivers Assessment should involve caregiver input Promote programs that increase education Promote programs that increase social support (Dual Programs)

For More Information www.alz.org www.alz.org/finchapter.asp http://www.bcm.edu/neurology/struct/admdc/admdc.html www.alzeimers.org