Jessica Wallace
COSI 345
May 3, 2004
The Alzheimer�s Family Planning Center
  While conducting my own research for this project, I myself encountered the difficulties that I suspected caregivers would experience in their quest to find resources and information to help them cope with this disease. Initially I was amazed at how much information is available for the caregiver. Advice, phone numbers, fact sheets, support groups, chat rooms, and government affiliates lace nearly every web page associated with Alzheimer�s or dementia. I started my search from the Cleveland chapter of the Alzheimer�s Association. Through this page I was introduced to the ADSC�s (Alzheimer�s Disease Support Center) website. From this page I could visit the National Institute of Aging�s website. That then sparked an idea to visit the Ohio Department of Aging website. Before I knew it, over an hour had passed and I had about six separate windows opened, all of them leading to different websites and different opportunities. I stopped for a moment and thought how valuable these resources were, but realized that as a caregiver, one would not have the time to sit in front of a computer to sort through this endless pool of information. I wondered how those individuals--elder caregivers specifically--without internet access or without knowledge of computers would benefit from all of these online resources. The answer simply was, they would not benefit much at all. Although having so many things available in our own homes via the internet is a step beyond what any could have imagined a few years ago, it really can be a burden. Because there is so much information available it can become confusing or misleading, especially for those individuals living with Alzheimer�s that were hoping to gain a better understanding of their disease by researching it online.
    One of the goals of my program is to provide caregivers and individuals with Alzheimer�s a better means of obtaining needed resources. As mentioned previously, a caregiver certainly does not have the time to research this material on the web. A caregiver needs a more efficient method to become educated about the disease. Another goal of my program is to focus on the individual, not only the individual stricken with Alzheimer�s, but also the caregiver. No two individuals with Alzheimer�s are alike; neither are the caregivers. Although much of the information one can find available is helpful, it is not always aimed at the individual. Rather, general tips or �warning signs� are provided. Not every person with Alzheimer�s disease is going to wander or dress inappropriately. However, one individual may show an uncharacteristic trait--such as talking to someone not really there continuously--that the caregiver would like to better understand, but might not be able to find any information about quickly and effectively.
   With my program, I would provide each caregiver with a �case worker� or specialist that would help make each transition from one step to the next a smooth one. The concept is very similar to what we have discussed in class with case management and skills training programs that are now available; it might even be a culmination of these care-giving interventions. However, it is my understanding that hospitals or other facilities do not actually appoint this type of help to a family once a member has been diagnosed with Alzheimer�s. What I hope my program could provide is immediate help to the family upon diagnosis. This could be done two ways. Each hospital, large or small, could have an Alzheimer�s Family Planning Unit. As soon as a family is made aware that a family member has this disease, they would be referred to the Alzheimer�s Family Planning office where they can set up an appointment to meet with a counselor. The second way, rather than having an office located within the hospital, the hospital would rather call our office upon diagnosis and would provide us with the information we would need to contact the family and offer our assistance personally.
    Having better resources available for caregivers is going to need to be addressed in the future as Alzheimer�s disease is becoming a growing problem, especially with the baby boomers now entering the later stages of their lives. It is imperative that we begin reconstructing the resources available now so that they can be more easily accessible to those who will need them in the future. Having trained workers as a part of our program will allow families to have personal contact with an individual that can give them expert advice on how to handle situations pertaining to the individual rather than to the stereotypical Alzheimer�s victim. Our staff would consist of social workers specializing in aging, as well as a team of individuals that would be able to conduct the research aspects that the caregivers do not have the time to do. These individuals would gather helpful resources and make them available in our office to those families that we would assist. Secretaries would keep track of the information provided to each family. It would be important not to distribute all information at once, as that can obviously be overwhelming. This would be a step-by-step process: information would be provided as needed. For example, there would be no reason for a family experiencing stage one Alzheimer�s to receive information yet about stage three. All help and advice would be centered on the individual and would pertain to the stage of the disease that the individual is currently enduring. The team of researchers would also help to facilitate programs that we would make available to our families right in our own center or in their own homes, since leaving the home is often problematic or impossible for caregivers. One caseworker, or counselor would be assigned to each family and would provide assistance for that same family from the onset of the disease until the end of the disease. A caseworker�s responsibilities would include providing guidance and resources focused solely on the individual; letting the family know all of the types of assistance that are available to them, such as respite care, adult day cares, assisted living facilities, nursing homes, etc.; providing emotional support and reassurance to the family; and helping them to better understand the progression of the disease by educating them about what they could do to make the environment for the individual with Alzheimer�s a more suitable and adaptive one. Making sure that the family never feels alone or clueless would be our priority.
  It seems as though a program like this would require a lot of funding. Money would be needed not only to pay the workers, but also to pay for the resources that would be distributed to each family. Grant funding would be ideal. Currently, there is a grant available through the Department of Health and Human Services that is geared toward developing new aging and disability resource centers. It even focuses on the �one stop shop� concept I have tried to elicit here. Yet, obtaining this grant is competitive and currently, Ohio has not yet received it. Two rounds of grants have been distributed since September of 2003; the second round was just distributed in April 2004. At this time there is no opportunity to apply for this grant as the grant funds were only awarded for this current year. At this time no future grants have been made. Ideally, this is the grant that we could use to develop the Alzheimer�s Family Planning Center. Once funded, it is my hope that insurance companies would begin to cover this type of assistance to families. As mentioned previously, this is an issue that many Americans are going to be faced with in upcoming years and it is important to provide them with the most easily accessible information and guidance possible. Insurance companies will have to understand the value of this type of resource and realize how it could only help families and possibly prevent them from placing their loved ones into nursing homes when it is not yet necessary. In this manner, the insurance companies would benefit from not having to immediately pay the costs of such living facilities for the growing number of adults that may be entering these facilities in the near future. With the help of our program, it would be hoped that individuals would not be entering nursing homes as early as some do now.
   Funding would be the greatest threat to this program, but there is hope in the new grant supplied by the Department of Health and Human Services. Another drawback might be the caregiver�s interpretation of the �caseworker�. The term �caseworker� might imply a lot of legal interference that a caregiver may not want to deal with on top of having to cope with taking on the caregiving role. I would attempt to stem away from this stereotype and allow the caregiver to view this person as a friend, a valuable resource, and as someone that is able to help him or her through each of the steps rather than to hinder them or become a nuisance to them. Also, the caregiver�s time might be another problem--whether the family would be able to come together and meet with caseworker and be able to take part in the programs that we would offer. I would make every effort to work with the family�s schedule. Ideally, I would want the caregiver to realize that having Alzheimer�s not only affects the individual, but also the entire family and that it requires a group effort to help provide a better living situation for the individual stricken with the disease. Not only does the individual live with Alzheimer�s, but the whole family, in a sense, lives with this disease as well.
   Many improvements must be made in all programs centered on aging. More affordable living facilities such as assisted living and respite care needs to be assessed by government funding. It is impossible to address all of the issues here, but my intended goal is to focus on the here and now by implementing the resources that are available now in hopes that they will only improve in the future and that I would then have newly developed and improved resources to provide to my clients as they become available. By focusing on the here and now, which is the individual currently living with Alzheimer�s, and mainly focusing on the individual�s needs I hope to improve the qualities of life of not only the individual with Alzheimer�s, but also the caregiver.
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