- With Mayo Clinic health education outreach coordinator
Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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Jan. 23, 2010
A call for change in Alzheimer's diagnosis, services
By Angela Lunde
I received this piece from a reader of the blog a couple of weeks ago. The author, Allan, asked if I might share it with you. It's well written and thought provoking, so I'm passing it along to you. I shortened it, and will respond next week.
"As we baby boomers start to deal more with Alzheimer's disease, doctors must be more willing to listen to anecdotal comments by well informed spouses/caregivers ... and doctors along with local/national associations must start providing more services for those with early onset Alzheimer's and those in early stages of Alzheimer's.
My wife has Alzheimer's. Only 63 when diagnosed six months ago, she's technically classified as having early-onset Alzheimer's ... a tag given to those who are diagnosed before the age of 65. There are many day-care activity programs available to those with moderate to severe stages of Alzheimer's, and that's a good thing. However, there's virtually no support available to those with early-onset Alzheimer's or in the earliest stages of Alzheimer's.
As is true for many eventually diagnosed with Alzheimer's, my wife began exhibiting symptoms several years before the official diagnosis was made. I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored. I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier. I mentioned her getting lost while driving in our community, her disorientation, her aphasia ... but these comments weren't seen as red flags by anyone but me.
Her behavior during doctor visits didn't seem to indicate any problems — her initial cognitive testing results were good, MRIs and blood work didn't show any problems, and the neurologist suggested that the symptoms I described were probably due to anxiety or stress. When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression. For many months, the recommended treatment brought no improvement ... only a worsening of Alzheimer's symptoms ... and we eventually went for a second opinion at a hospital-affiliated Alzheimer's Disease Research Center. There the diagnosis was probable Alzheimer's ... not depression.
Some of the early signs of Alzheimer's are identical to signs of depression or stress. It seems that neurologists and cognitive psychologists too often base their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients. This needs to change! Doctors need to give more attention to the anecdotal observations supplied by spouses/caregivers.
National organizations such as The Alzheimer's Association must also change how they provide services. They do a great job of providing support groups for spouses/caregivers, as well as day care opportunities for those with more advanced Alzheimer's, but they often provide no groups for people with early-onset Alzheimer's or in the early stages Alzheimer's.
Alzheimer's takes a terrible toll on those suffering from the disease and on their spouses/caregivers. A good first step would be to begin forming groups around the country designed to meet the needs of those who are diagnosed at a young age, and for those who are in early stages of the disease!"
58 comments posted
January 26, 2010 7:24 p.m.
I agree 100% with Allan. My father had Alzheimer's; he passed away in 2000. But prior to this, he was fiercely independent, living in his own home in a community 45-50 minutes drive away from me. He objected to my 'interfering' in his life. He wanted to do his own shopping, etc, etc, but would remember only one item to buy, and lost his way walking home. CCAC (Community Care ) 'assessed' him, said he was capable and I should involve myself less, take a 'holiday' and not worry so much. Eventually, I was driving to his home 6 days a week, to share a meal with him, keep his home tidied and clean, prepare meals for him. pay his utilities and property taxes. He could not keep track of these things himself. He was finally hospitalized when he had a 'silent' heart attack. He thought I had put him in an 'old people's home' and called me every name under the sun. I felt I was fighting a battle on my own. My only real support was my local Alzheimer's support group, (in my community, not his). When in Rehab, he fell, because of another silent heart attack, and broke his hip in the fall. Because of the heart attack, they could not do hip replacement surgery, and he passed away within 3-4 weeks, in hospital, just after his 93rd birthday. What remains with me was how I was criticized rather than supported, even by my brother and his family who lived within 10 minutes drive of my father's home. They seemed to feel that I was taking advantage of my father.
- Eefje
January 26, 2010 6:50 p.m.
I so understand the frustration of all here. My husband was told to go on LOA due to memory loss at age 59. After testing, diagnosis is MCI and depression....they gave him meds, but he "tweaks the dosage ALL the time. The doctor at the memory loss clinic asked ME questions, next visit he reviewed and said, "wife said....blah blah, that is IF we can believe her....WHAT???? Why would I lie????" I have settled into a routine = NEVER knowing what comes next...but I stay extremely calm, that has helped us both!! He is easily aggitated - I have gotten better at "detaching" and keeping the focus on me and taking care of me too. Good luck to everyone out there. God bless us everyone!!
- Theresa
January 26, 2010 6:02 p.m.
I'm 70 years old and the wife /caretaker of husband who has been diagnosed with moderate Alzheimer's. The other part of his problem is vascular dementia from years of heart problems. I find myself very stressed and "almost" alone in this battle. He doesn't believe he has a problem and refuses to attend any day programs - thinks they are really sick people and will never go back. He still can socialize to a point and wants to go somewhere everyday to visit any friends or relative. I am so burned out from driving (he lost his license last spring) and tending to him, that I long for someone to accompany him even 1 day out of the week. He is much worse than he appears and the doctors prescribe some meds that pep him up even more. Need help for someone like him who is not quite that bad yet. Best of luck to everyone out there.
- Catherine
January 26, 2010 4:14 p.m.
How true! It took me over 2 years and me finding the source for my husband to be diagnosed. Family internist was not help. All that time wasted when he could have been on the meds. Many doctors really do "practice" medicine instead of listening to those who live it 24/7 - it is so darn frustrating when you look to them for help that does not come!!!!!!!!!!!
- Jane
January 26, 2010 4:09 p.m.
Allan, you have written a great letter, and I agree 100% with your comments that doctors should pay more attention to concerned spouses. After two visits to my husband's GP I still had to insist that he be tested, and then insist on a referral to a specialist. So far, the diagnosis is mild cognitive impairment, and his condition is finally being monitored by a psychiatrist trained and experienced in this area. The problems with repeating questions and forgetting information was just glossed over or completely ignored.
- Joanne
January 26, 2010 3:32 p.m.
I understand what you are saying when you say that most doctors do not pay much attention to you when you try to describ what is going on.
- Beth
January 25, 2010 9:39 a.m.
From a PET scan the radiologist suggested a diagnosis of frontal temperol dementia. What you have said about a Dr. listening to a spouse's input in right on the mark. The neurologist I am seeing finds no problem with my cognitive abilities over a six month span, however my wife always accompanies me and he pays attention to her observations. He admits having a problem coming to a conclusion as yet. He agrees with the PET scan diagnosis, yet his test of my cognitive abilities are contrary. On the other hand if someone were to follow me around constantly they would observe memory problems, anger outbursts,etc. I will give my neurologist credit as he listens to what my wife tells him and wants to see me back again in another six months to note any changes. Doctors, you need to listen to your patients and those close to them. We senior citizens have lived in our bodies for many years, we do get to know when something is not right and as for our actions those closest to us see the changes.
- Rick
January 23, 2010 10:11 a.m.
Thank you for your letter. It is so true. I have the privilege of working with the elderly, many of whom have Alzheimer's disease. Not only are many physicians slow to listen to concerns but many want to just prescribe a pill to fix it. Sometimes helpful but many times the medications are more harmful. Good luck with your wife. There are many good people and services available that can support you and her.
- Linda
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