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The Alzheimer’s Association

    Fred Moskovitz, Psy.D.

The Alzheimer’s Association is an invaluable resource in the management of dementia. It provides a broad variety of support services for caregivers and their families. The Alzheimer’s Association offers referrals, crisis intervention, educational seminars, support groups, and updates on research for families dealing with Alzheimer’s disease (AD). A wide range of tried and tested information is available for caregivers coping with the ravages of AD from its insidious onset right through its final stages. Valuable support can also be provided for those who have been recently diagnosed with early onset AD who are frequently in a state of denial, terror, and require immediate intervention to stabilize their shattered lives. Health care professionals from social workers to physicians and attorneys can access the Association and obtain vital resources, referrals, and updated information on behalf of their clients or patients. Regardless, whether one is a concerned caregiver, a patient newly diagnosed with AD, or a healthcare provider, the services offered by the Alzheimer’s Association are a vital resource in the management of dementia and Alzheimer’s Disease.

The Alzheimer’s Association is very “user friendly.” They can be reached 24 hours a day 7 days a week. The staff members are courteous and accommodating and will generally handle inquiries in an efficient manner; the Association is non-profit and all services are provided for free. Donations are accepted, and are strictly on a voluntary basis. Staff members will never ask for a donation, but your name will be added to a mailing list for future solicitations. The Alzheimer's Association is effectively organized with separate coordinators for various services such as social services, support groups, safe-return, educational seminars, speakers’ bureau, etc. All telephone calls are promptly returned whether they are to a director or a coordinator. There is no sense of that overwhelming hierarchal bureaucracy that is often found in many non-profit organizations. They have voluminous amounts of brochures covering most issues of AD and will promptly mail you whatever may be remotely helpful to you. An extensive list of self-help books and pamphlets are available for purchase and may be ordered through the Association at a discount.

The Alzheimer’s Association has a twenty-four hour a day manned hotline. A counselor is always available for crisis intervention. Many of the counselors have themselves been caregivers for a spouse or a family member suffering with AD. As a result, there is a clear sense of empathy and an implicit understanding on behalf of the counselor that immediate and pragmatic advice must be offered along with a course of action or a referral. The hotline counselors are well trained and provide the beginnings of a support network for caregivers at risk for burnout. Caregivers often call in middle of the night, having tossed and turned in bed for hours feeling isolated, frightened and desperately in need of validation during this time of crisis.

After the hotline, arguably the second most important service offered by the Alzheimer’s Association is their Safe Return Program. This is a service that is invaluable for caregivers’, and in addition has saved many lives over the years. For a nominal fee, the family of an AD client can obtain an identification bracelet or necklace that will identify who he/she is in the event that they wander or elope. The client is also registered with the National Safe Return Program, a databank, which has access to all pertinent information with regard to  the client. In the event that a client is reported missing the Safe Return coordinator will notify the various local authorities and will begin the search process. The coordinators are well connected with the police, hospitals, and national authorities, and are linked to the national database. The Safe Return Program has been successful in resolving the great majority of calls made to them through the safe  return of the person suffering from AD, while sparing the family any additional grief.

The most popular service offered by the Alzheimer’s Association is their support groups. There are dozens of groups throughout The Greater Metropolitan Area. They are easily accessible for working caregivers and are offered during the mornings, afternoons or evenings, and these groups may be offered weekly or bi-weekly. There is never a fee for participation in any group sponsored by The Alzheimer’s Association. There are groups for newly diagnosed AD clients, as well as for children or spouses whose loved one has already passed away and are in the process of grieving. Groups are available for caregivers who are dealing with the early stages of AD or for those that are late stage and the patient may already have been institutionalized. The groups can address any stage of the disease or any type of caregiver if there is a community need. The Support group coordinator has a list of all the current groups in the city and can be called for a referral. The Association also trains support group leaders to facilitate these groups, and this intensive training tutors group leaders in legal, medical, social, and psychotherapeutic issues that pertain to AD. I have completed this training program and it consists of five full days of training from 9:00am- 5:00pm. Support groups provide validation, safety, and coping methods for caregivers that are experiencing turmoil and isolation in their lives.

The Alzheimer’s Association offers a variety of educational seminars for caregivers, family members, and anyone from the community regardless of need. The seminars are offered throughout the five boroughs in a repeating monthly cycle so that any missed seminar can be made-up the following month. Topics covered are legal, financial, and educational issues dealing with all stages of AD. Many caregivers need information about placement and a number of seminars deal with this issue from many vantage points. Attorneys, medical professionals and social workers who are experts in their particular fields run these seminars. Seminars may be of an introductory nature or more advanced and are a wonderful resource for information and referrals. Often, educational seminars provide caregivers with a sense of empowerment and control and prevent them from making ignorant decisions, or being waylaid by surprises.

The Alzheimer’s Association is a wonderful source for referrals. They are knowledgeable about attorneys, psychotherapists; geriatric care managers, skilled nursing facilities and a host of other resources. The Social work coordinator at the Association will interview and refer a client at no cost. The Alzheimer’s Association is a national organization and can assist families at a distance. When a caregiver has a complex issue to resolve such as finding a homemaker or aide that is experienced with the Kosher Dietary Laws, the association will canvass their database and attempt to solve such cultural problems. Cultural competence is acknowledged and a variety of groups and volunteers are available to address the needs of the diverse groups of New York City.

The Alzheimer’s Association participates actively in fundraisers to raise money and allocate these resources to all their various activities, which is their only source of funding. They donate a great amount of money to research in various medical centers. In addition, these fundraisers bring attention to the public about the scourge of AD. They lobby the federal government about Medicaid and Medicare funding for AD. The Alzheimer’s Association is also very active on the legal front and backs legislation to aid families with legal/ financial issues. They have been instrumental in supporting pivotal legal court actions in order to defend the rights of caregivers in such issues as “spousal refusal.”

The Association has a Speakers’ Bureau, which is effective in disseminating updated medical research and the most current information on how to deal with AD. All speakers are volunteers and will often speak where there is public interest. The Speakers’ Bureau receives invitations from Churches, Synagogues, Universities, etc. I am currently on their list of potential speakers and am awaiting an audience to address.

The Alzheimer’s Association has a coordinator who will set up programs in skilled nursing facilities or assisted living facilities that are concerned with providing the best level of care to their residents afflicted with AD. The coordinator will provide in-house training to the staff and administration on how best to serve all the various medical or behavioral issues in an institutional setting. I have visited a number of these facilities and there is a noticeable difference in the quality of care of AD residents in the nursing homes that have undertaken voluntary supervision by The Alzheimer’s Association. There is more individual attention, and residents are less agitated and involved in a variety of enriching activities.

My personal experience with The Alzheimer’s Association has been very positive. I have attended most of their educational seminars and have completed their support group training leadership program. I am currently in peer group supervision through The Alzheimer’s Association although the group I am currently facilitating is a hospice group with a different organization. I have found them to be very helpful and accommodating. When I first contacted The Alzheimer’s Association a number of years ago I was expecting a bureaucratic organization that would be difficult to access and work with. I have found that to my surprise this was not so.

There are over four million people in the United States suffering with AD. If you are 85 years or older you stand a fifty percent (50%) chance of acquiring Alzheimer’s disease. Seventy five percent (75%) of residents in skilled nursing facilities have some level of dementia. At present there is no cure for AD and at best it can be very minimally kept in check through medication. There is an urgent need for medical research, caregiver support, legal and educational seminars and legislative activity. The Alzheimer’s Association is a “user friendly” organization that is effectively providing much needed relief to caregivers and filling a void in their lives.

 

 

ElderCare Advocates, Inc.
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