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
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.
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.
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.
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.
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.
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.
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.
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
research. She’s thankful that he doesn’t have the pain of cancer, but she wants more comfort for
the people with dementia.
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?
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.
But will the person with dementia accept a stranger?
(Response from audience: some said, some said no.)
There’s a need for respite but a question of from whom?
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.
At AAA, we offer up to 8 hours a week, but there is a waitlist. We need more funding.
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.”
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.
Veteran’s home that husband is in has a 50 bed dementia unit. It’s a very nice unit with
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
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.
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.
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
is an organization they worked with until they got their own dog. Get a pet – it can reduce stress.
Find fun things to do.
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.
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.
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
She read in the newspaper about a memory class. When is it?
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.
Prescription drugs are expensive. The Area Agency on Aging has a program for prescription
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.
You can also compare home health agencies on that Web site.
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.
Three task force members spoke:
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
Thank you for coming today. We do listen and work for you.
Thank you for coming.
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
Submit additional testimony to Carroll Rodriguez at firstname.lastname@example.org.