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

2. 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.

3. 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.

4. 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

5. 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

6. 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

7. 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

8. 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***

9. 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.

10. 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

11. 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

12. 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.

13. “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.

14. 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.

15. 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.

16. 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.

17. 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)

18. For More Information www.alz.org www.alz.org/finchapter.asp