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Alzheimer's Disease, A Community Project
by: Amy Burton


Introduction
Throughout this year, my focus for my social work community project has been on Alzheimer's Disease. I chose this topic, because I am very interested in finding out more about the disease and what resources are available in Chico for people who have Alzheimer's and their caregivers. From my research, I was able to find several articles on Alzheimer's. These articles talked about what many of the needs and concerns are for caregivers and their family members. I discovered that Alzheimer's Disease is a progressive degenerative disease of the brain where brain cells die and are not replaced. It results in impaired memory loss, thinking, and behavior, and is the most common form of dementing illness. An estimated four million Americans are afflicted with Alzheimer's Disease. This disease is the fourth leading cause of death among the aged, following heart disease, cancer, and stroke. Because the population is aging, an estimated fourteen million people will have this disease by the year 2050. Ten percent of those over sixty-five and almost half of those over the age of eighty five have this disease.

At the present time, there is no cure for this disease which affects millions of people world wide. Through my research I have found that this disease not only directly affects the person who has Alzheimer's, but family and friends as well. Many of these family members and friends end up becoming the primary caregivers for those individuals that have this disease. Many people fall in the sandwich generation. This is when children care for their parents, as well as their own children. Research shows that the stressors of caregiving often become overwhelming for many people. This strain can result in caregivers having poor health and family conflicts, just to name a few of the problems that go along with caring for some one with this disease.

After reading about Alzheimer's, I spoke with several supervisors, direct service providers, and consumers who are directly involved with Alzheimer's patients and their caregivers. Through these interviews, I learned a great deal more about the services that are available in the Chico community for Alzheimer's patients and their families. There are several day programs and support services. Support groups are available through many services in town and have been found to be helpful to caregivers and families who are dealing with Alzheimer's.

Statement of Need
In today's society, a great deal of elderly care is not covered by Medicare or Medi-cal. Assisted living is one part of elderly care that is not covered by this insurance in the majority of states; now only twenty-two states provide this coverage. Assisted living is where the elderly need twenty-four hour support, but do not require skilled nursing. Some elderly who live in assisted living cook for themselves and take care of their own personal hygiene, while others have meals prepared and are assisted with bathing, etc. There are several assisted living facilities designed only for people with Alzheimer's. Many of the Alzheimer assisted living facilities are locked for the patient's safety, because Alzheimer patients often wonder off and become easily confused. The average monthly cost for such care ranges from $1,500-$3,000 in rural areas. Since this kind of living is not covered in California by Medicare or Medi-cal, Alzheimer's patients and their families must pay out of their pockets for these living arrangements, or compromise the quality of care to a level they can afford; this places the elderly person at risk and the family experiences greater stress.

Description of the Intervention
Skilled nursing is the only complete care program that is covered by Medicare and Medi-cal for elderly who have Alzheimer's. An Alzheimer's patient must first qualify for skilled nursing, which forces the Alzheimer's patients into restrictive environments before they are ready, only because it is covered under these insurance policies. I believe that it is essential for assisted living also to be covered under Medicare and Med-ical. For my intervention, I lobbied for a bill on the state level which proposes that Medicare and Medi-cal cover assisted living for the elderly. This bill is SB 353 and has been introduced by Senator. Maurice Johannssen.

I spoke with an advocate who wrote an editorial in March of 1999 on SB 353. The advocate encouraged me to write letters supporting this bill. He told me to send these letters to many political leaders, including Governor Davis and the President Clinton. I wrote five letters supporting this bill and encouraged many other people to do the same. If this bill passes, Alzheimer's patients would be able to live in assisted living facilities. For some this means not draining their entire savings and that of their families, and for others, it would mean equity of care regardless of one's economic class. I wrote another letter to the Orion, the Chico State school newspaper and the Enterprise Record, our local newspaper. I think that it is important to educate people about this disease. With public attention, legislators will have to develop more services to help Alzheimer's patients and their caregivers.

Evaluation of the Intervention
As I stated earlier, I wrote letters to several political leaders lobbying on a state level for SB 353. I received several letters in response to my letters. I was pleased with the turn out of responses that I received. I sent out six letters and received five responses. Many of the responses were in support of SB 353. Many of the state senators and state advocates stated that they would support this bill. SB 353 needs 2/3 vote in order to become a bill. I wrote letters supporting this bill because I government officials to have a better understanding of how important this bill is to the general tax payers and voters. My letter to the Orion and the Enterprise Record have not been published. I have had very little contact with these newspapers. I will continue to work towards getting a letter to the editor published in at least one of the local newspapers. SB 353 is currently being reviewed by the Committee on Appropriations.

Reflections on the Project
I would like to conclude by saying that I feel as though I have begun to make a difference in the community in educating myself and others about Alzheimer's Disease. My grandmother has Alzheimer's, so I am personally affected, as is my entire family. Elderly who have partners should not be thrown into poverty in order to support one person with Alzheimer's in protected and quality settings. Long term care can be overwhelming for those elderly who are on a fixed income and have very little savings. I would encourage other social work students to carry on the lobbing for changes in the current health care system for the elderly. I urge others to write their local congress people and lobby at their state legislation or on a federal level to cover all states.

References
Bibliography
Barber, Clifton., & Pasley, Kay. (1997). Family care of Alzheimer's patients: the role of the gender and generational relationships on caregivers outcomes. Journal of Applied Gerontology. 14(2), 174-192.

Maguire, P., Conor, & Kirby , Michael. (1996). Family members' attitudes toward telling the patient with Alzheimer's Disease their diagnosis. BMJ: British Medical Journal. 313 (17056), 529-531.

M.B., Kulper, & Wester, F. (1998). In the shadow: the impact of chronic illnesses on the patients partner. Qualitative Health Research. 8(2), 237-253.

Molinari, Victor. Family support group of the Alzheimer's Association : an analysis of attendees and nonattendies. Internet www page, at URL;www.europa.com(1994).

Stagnaro, Frank.(1996). Alzheimer's; old disease gets some new attention. Business Journal Serving San Jose & Silicon Valley.

Stukley, Jon. C., & Smyth, Kathleen, A. (1997). The impact of social resources on the Alzheimer's Disease caregiving experience. Research on Aging. 19)4), 423-443.

Resources
  1. President Clinton -- (202) 456-1414 -- president@whitehouse.gov
  2. Barbra Boxer -- (916) 448-2787 -- senator@boxer.senate.gov
  3. Gray Davis -- (916) 445-2841
  4. K. Maurice Johannessen -- (530) 458-4161
  5. R, Tim Leslie -- (916) 969-8232 -- senator.leslie@sen.ca.gov
  6. Jason Bloome -- Public policy chairman for the Alzheimer's Task Force -- (800) 330-5993
  7. Janet Levy Center-Area On Aging -- (530) 898 5923
  8. Peg Taylor Center For Adult Day Health Care -- (530) 342-2345

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