Alzheimer’s Disease State Plan Task Force
Community Forum – Cape Girardeau, MO
Monday, April 5, 2010
10:30 AM – 12:00 PM...
Caregiver #4
His wife had Alzheimer’s until she died 6 years ago. Both his wife’s mother and aunt had it, and
now her si...
research. She’s thankful that he doesn’t have the pain of cancer, but she wants more comfort for
the people with dementi...
Try to educate yourself as much as possible. Get information from library, Alzheimer’s
Association, facilities, and from...
is an organization they worked with until they got their own dog. Get a pet – it can reduce stress.
Find fun things to d...
Professional #1
Prescription drugs are expensive. The Area Agency on Aging has a program for prescription
Written Statement #1
Alzheimer’s is the most FRUSTRATING disease whether for help, for information, or finding a
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  1. 1. 1 Alzheimer’s Disease State Plan Task Force Community Forum – Cape Girardeau, MO Monday, April 5, 2010 10:30 AM – 12:00 PM Welcome and Introduction by Lieutenant Governor Peter Kinder Presentation of Alzheimer’s disease statistics and the purpose of the task force and community forums by Carroll Rodriguez, Alzheimer’s Association – St. Louis Chapter Introduction by facilitator Cheryl Klueppel, American Red Cross – Southeast Missouri Chapter. 55 people in attendance Comments Caregiver #1 Husband is in late stages; diagnosed in 2006. She cared for him at home until last June, and now he is at the Lutheran Home. The most positive thing from the Alzheimer’s Association has been the support group. The least supportive thing is that if you seek home care, you’re given a list but no indication of whether they’re trained or competent – no certification. You’re just dumped out there with a list. Caregiver #2 Mother has had Alzheimer’s for 5 to 6 years, and dad died last year of Alzheimer’s. She promised her mother at her father’s funeral that she would never put her in a nursing home, and that promise is now coming to haunt her. Care requires her, her three sisters, and her husband. When do you know it’s time? Mom has long-term care insurance, but that doesn’t work until she goes to a nursing home – she can’t use it for assisted living. People should know this about long- term care insurance before they buy it. This has been a great financial burden. She had to quit her job a year ago because she wasn’t able to do both. Now, she hopes that she may be able to go back to work. It’s also hard to find time to go to a support group; she had her mom during the last meeting time. Person with Dementia #1 She was diagnosed last year. It is important to her to keep busy. She has photography: putting slides in the computer and printing cards. People need to keep busy and keep their hobbies. Caregiver #3 Her mother has Alzheimer’s. She doesn’t know how she would get by without her siblings. It’s important to keep your loved ones functional. A researcher at Washington University said Alzheimer’s unravels cognitive functioning. Need activities and learning to keep functional. She is being an advocate for her mother with Medicare.
  2. 2. 2 Caregiver #4 His wife had Alzheimer’s until she died 6 years ago. Both his wife’s mother and aunt had it, and now her sister is scared to death of getting it. He could talk for an hour but suffice to say that he echoes the comments made so far. There was no one for him; his closest relative live 450 miles away. When his wife died, it hurt. He didn’t care; life was over. It still hurts today. A woman who helped him with his wife for 2 years encouraged him to apply with the Alzheimer’s Association. He hasn’t enjoyed anything more than his work with the Alzheimer’s Association making presentations. He needs help from everyone in the room – he needs more people to talk to – more groups to present to because everyone needs to know about and hear about this disease. Also, the disease costs so much. Out of pocket private pay, he paid $250,000 over 5 years for his wife. Caregiver #5 Her mother has Alzheimer’s and has been in a nursing home for the past 2 years. She is here today to learn more. Today’s USA Today has an article on Alzheimer’s disease, but the accompanying picture only shows the person’s back. We need a face – we need to put a face to Alzheimer’s. It is good to have the Mind List from Washington University. Washington University in St Louis will take the brain for autopsy but needs it 4 hours after death. Is there research for southeast Missouri? Are there drugs for behavior? Haven’t found any yet. Caregiver #6 She is a nurse practitioner but is currently not working because she is helping her father find a place after her mother’s death. It wasn’t until after her mother’s sudden death that the family realized how severe her father’s illness was and how much her mother had been doing for him. They were not aware because her mother had hid the things she was doing and just how far along their father was. Her father doesn’t need a nursing home because he is in good health. Finally found an assisted living facility in Ste. Genevieve because Cape’s were full with waiting lists. The assisted living facilities need to emulate normal life. Caregiver #7 Husband died 3 years ago with Alzheimer’s disease. Alzheimer’s is the most horrible thing, especially for the caregiver. Your best friends and even your children don’t know what you go through. Caregivers need support. Thank goodness for the Alzheimer’s Association and Lisa who got her involved in support groups. A man and his teenage son are in her support group because his wife has Alzheimer’s and is 42 years old. This is not just affecting older people. Need healthcare workers who are trained in this. Ask them about training – some say that they have but you find out it’s just watching some video. Caregiver #8 Her husband who is with her today has dementia – it’s too scary to say Alzheimer’s. His sister had problems years before – she became angry and frustrated, couldn’t speak (only gibberish). Her husband is doing better than his sister. It just affects people differently. She has had great support from her support group. It’s good to have people to talk to but she wants a cure. Where is this coming from? Water? Pollution? Home life? Landfills? Wants more
  3. 3. 3 research. She’s thankful that he doesn’t have the pain of cancer, but she wants more comfort for the people with dementia. Professional #1 Works for the Area Agency on Aging (AAA) and people need caregiver respite. The problem is that the person with dementia knows you but not a stranger coming to provide respite. The question – what would be the best way to address this? Caregiver #9 Put on a waiting list 2 years ago for respite which would be 7 hours each month. That’s nothing, especially for someone who is doing it alone. Professional #1 But will the person with dementia accept a stranger? (Response from audience: some said, some said no.) Facilitator (Recapping) There’s a need for respite but a question of from whom? Professional #2 Director of special care unit. They offer respite care but find that families are more concerned about sending loved one into nursing home for that amount of time. Professional #3 At AAA, we offer up to 8 hours a week, but there is a waitlist. We need more funding. Caregiver #10 Husband has Alzheimer’s and is at the veteran’s home. He started having problems when he was 57, was diagnosed in 2001 at age 58, and is now in his 10th year with the disease. She cared for him for 7 years; the children came to help. When she sought respite, she contacted the veteran’s home in Popular Bluff. They said if he could walk out, they can’t offer respite. When she did place him in a home, she put him in the veteran’s home on Kingsbury, and it is a wonderful place. She had to first put him on a waiting list. She knows that many people here don’t even know about the veteran’s home. Everyone at the home, even the kitchen workers, has contact with and knows each resident. Her husband’s father died 2 years ago from Alzheimer’s disease. When she took her husband to Washington University, she was told that younger onset Alzheimer’s is in the genes. His sister died at age 63 in the 1980s after 5 years in the nursing home with Alzheimer’s. With her husband, she went to Washington University to get a second opinion and later had that confirmed with Saint Louis University. When he went into the nursing home, people wondered why because he looked “normal.”
  4. 4. 4 Try to educate yourself as much as possible. Get information from library, Alzheimer’s Association, facilities, and from people around you (such as support groups). Get all the information you need; it helps you understand what is happening. Don’t hesitate to call hospice when they are in the last stage. It will give you care on top of the care you are currently receiving and is picked up by Medicare. It gives you a total crew of nurses, doctors, social workers, and chaplains. Lieutenant Governor Kinder Missouri has 7 veteran’s homes, and we are proud of them. Recently made aware of case in one of the veteran’s home where a person had to leave because they could no longer care for him with Alzheimer’s disease. Caregiver #10 Veteran’s home that husband is in has a 50 bed dementia unit. It’s a very nice unit with courtyard, etc. Professional #4 Had grandmother with Alzheimer’s disease and works with residents with Alzheimer’s. It runs in families, including her own. Early detection is so important; need education. People wait so long to take a person to a doctor. Make sure proper diagnosis with others ruled out. There is help for early diagnosis. Caregiver #11 She teaches special education at a high school and has to work with behavioral issues. Wonders if there is some overlap. For example, with respite, there needs to be familiarity with the respite caregiver needs to be established. Perhaps bringing in the respite worker to have a meal with the whole family would make their presence normal. Then when they come in for respite the individual is familiar with the caregiver. Person with Dementia #2 He was a former salesman and pastor who has been diagnosed with dementia. The best thing to give is support. Don’t feel sorry for him; he has a God who heals. Religion is one of the best things to help with things like this. He’s going to make it. He’s had a good life and with people like this and events like this, we will make it. Professional #5 With a grant, she has been able to start a one-day adult day program with great success. If this is any indication, there is a great need for adult day in southeast Missouri. Professional #6 She is an activity coordinator at one of the Missouri veteran’s homes. The disease is hard on caregivers. Music therapy, pet therapy, and having children visit have helped at the home. Residents need familiarity, and you need to be familiar with them to plan their activities. We have people who love to dance – something they don’t forget – which is why we have music therapy and keep the music on. Have your loved one volunteer with the humane society. Pet Pals
  5. 5. 5 is an organization they worked with until they got their own dog. Get a pet – it can reduce stress. Find fun things to do. Caregiver #12 Her father had Alzheimer’s and passed away after falling. A year later, her mother has come down with it. She is able to do things for her mother that no one else can do – and that’s important to her. She has decided to retire so that she can take her mother out of the nursing home. She will care for her the best she can. Their first sign was that her mother had forgotten how to cook. They thought she just didn’t want to, but they realized that she had forgotten. She fell and had trouble walking because of the fracture in her back. She was aggressive in the home and hit someone who entered her room because she didn’t know them. They sent her to another home in Sikeston and it was the worst thing they could do. There, they put her on drugs that calmed her down, but in her eyes, they calmed her mother down too much. She became too idle. Now, she knows she has to take her mother out of the home at least for a little while – not sure how long. Her mother will do things for her but not the nurses. When her mother doesn’t know who she is anymore, that’s when she knows it’ll be time for another choice to be made. She knows she’ll need a lot of support – glad to get it here. Caregiver #13 Question – is there a protocol that doctors or neurologists are given? Is there a packet for families? Is there a care coordination team? We were just given a diagnosis and nothing else. Professional #7 Works for the Alzheimer’s Association and her grandmother had Alzheimer’s. A primary consideration is training for the medical community. It’s great to have Washington University, but we shouldn’t have to drive 2 hours to St Louis to get doctors who can give referrals about what to do after a diagnosis. The Association is trying to work with primary care physicians, but individuals who know about Alzheimer’s can also encourage their own doctors to be connected with the Alzheimer’s Association. The Association also has Care Consultations, and individuals can call the 24/7 helpline to schedule an appointment. When you get a diagnosis, your doctor should also hand you a packet from the Alzheimer’s Association, but we know that’s not happening. Caregiver #14 She read in the newspaper about a memory class. When is it? Professional #5 Thursdays, 10 am-2pm at Lutheran Family and Children Services, $25. It has grown, and they are looking at extending to 2 days or to 2 groups. But it has worked well to have early and later stage individuals interacting together.
  6. 6. 6 Professional #1 Prescription drugs are expensive. The Area Agency on Aging has a program for prescription costs. Professional #8 Works as the long-term care ombudsman coordinator for a facility. Shouldn’t assume that when looking for long-term care that all are equal. The Web site medicare.gov has a link to compare nursing homes (under Resource Locator). It lists who has special care units and has the new 5- star rating. As a long-term care ombudsman, she would be happy to help anyone. Professional #1 You can also compare home health agencies on that Web site. Professional #9 Works as an outreach coordinator in the Southeast Missouri area for the Alzheimer’s Association. The brochures and any Association materials have the 24/7 Helpline number and the Web site for the Association. There will also be a free caregiver conference in Cape Girardeau geared toward caregivers. Person with Dementia #1 She says she’s lucky to live with her son, his wife, and her grandson. Jokes that she always has a doctor in the house because her son is a doctor. Closing Three task force members spoke: Joan D’Ambrose There is no celebrity face for Alzheimer’s, which means less public awareness. Federal government funds for Alzheimer’s research is about $500 million a year, but for other diseases, each one gets about $6 billion. These other diseases used to be fatal many years ago and now are not. Research is important; tell your legislators. For physicians entering the field of practice today, 70% are specialists and only 30% are primary care. This means that the primary care physicians are stretched. But it is okay to advocate and push for a better diagnosis. In fact, it’s needed. Tim Dolan Thank you for coming today. We do listen and work for you. Glenda Meachum-Cain Thank you for coming.
  7. 7. 7 Written Statement #1 Alzheimer’s is the most FRUSTRATING disease whether for help, for information, or finding a physician who understands this disease. We need a treatment center clinic that travels to rural areas for counseling and evaluations and clinical trials. Staff changes at Alzheimer’s unit. Written Statement #2 I would like to see a research group that studies patients, provides medicine, and helps with a few questions. Submit additional testimony to Carroll Rodriguez at carroll.rodriguez@alzstl.org.