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A New Way To Care For Patients With Dementia

How an Arizona retirement home has found a kinder, gentler way to take care of patients with dementia.

Alexis McKenzie, right, executive director of The Methodist Home of the District of Columbia Forest Side, an Alzheimer's assisted-living facility, puts her hand on the arm of resident Catherine Peake, in Washington, Monday, Feb. 6, 2012. (AP)

Alexis McKenzie, right, executive director of The Methodist Home of the District of Columbia Forest Side, an Alzheimer’s assisted-living facility, puts her hand on the arm of resident Catherine Peake, in Washington, Monday, Feb. 6, 2012. (AP)

The big facts on dementia and Alzheimer’s are scary.  Five million Americans with Alzheimer’s already, and the big Baby Boom generation just moving into the Alzheimer’s years.

But the little facts are imposing too.  How hard it can be to care, day in and day out, for a loved one or a patient with Alzheimer’s.  And how tough it can be on the aging, struggling victim of dementia.

There’s a push on for a better way.  Less restraint.  Fewer drugs.  More respect.  And maybe more joy, even in the difficulty.

This hour, On Point:  a new, more graceful grappling with Alzheimer’s.

- Tom Ashbrook

Guests

Tena Alonzo, education and research director at Beatitudes Campus, a retirement community in Phoenix, Arizona that has been at the forefront of finding new ways to care for people with dementia.

Mary Mittelman, nationally-recognized Alzheimer’s researcher and professor of psychiatry at New York University’s Langone Medical Center.

Music

We’re also featuring in this hour the premiere of a new version of the song “Rhinestone Cowboy” off of country legend Glen Campbell’s upcoming album: “See You There.” (You can pre-order from Amazon here.) Campbell has retired from touring after revealing that he is living with Alzheimer’s disease.

From Tom’s Reading List

The New Yorker: The Sense of an Ending — “One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking.”

The New York Times: Studies Find Mixed Results for Dementia Units — “By their euphemistic names, ye shall know them: The Memory Care Unit. The Reminiscence Neighborhood. Homestead. These special units for residents with dementia have spread throughout the American nursing home industry; more than 16 percent of nursing homes now include one.”

Associated Press: Study: Dementia tops cancer, heart disease in cost – “Cancer and heart disease are bigger killers, but Alzheimer’s is the most expensive malady in the U.S., costing families and society $157 billion to $215 billion a year, according to a new study that looked at this in unprecedented detail.”

 

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  • Shag_Wevera

    As someone who has worked with Alzheimer/dementia patients for years, assisted suicide and euthanasia ought to at least be part of the discussion.  I’ve seen many long term cases where when the patient finally passes, no one comes to mourn, because they had lost the family member and said their good byes years prior.  All that remains at the end is often a hollow, unloved shell. 

  • StefinOKC

    I lost my father in August of last year to early onset Alzheimers, he was a physician and succumbed to the disease at the age of 69. The journey of caring for him at home and transitioning into a “memory care” facility was emotionally exhaustive. We relied heavily on the resources available through the Alzheimer’s Association and yet the experience was such uncharted territory. The expression that best sums up what happened with my father was “a long goodbye”.

  • Yar

    Isn’t the nursing home patient a job creator? Take that out of a local economy and you have even more problems.  I want two years of public service for all high school graduates.  Respect your elderly. Take care of a person in all stages of life.

    • amy collupy

      i total agree take care of the elderly, some people don’t have anyone to take care of them and if it wasn’t for the nursing homes and the people that work there. they would have no one to smile at in the morning. Some people just get to busy with they lifes and trying to make ends meet.

  • http://www.facebook.com/people/Chester-Twarog/1739818512 Chester Twarog

     Coconut Oil (composed predominately
    of medium-chain
    triglycerides (MCT)) for a coconut
    ketone therapy and diet that is backed by decades of medical and
    clinical research and has proven successful in restoring mental function
    and improving both brain and overall health to prevent and even reverse symptoms associated with Alzheimer’s disease,
    Parkinson’s disease, amyotrophic lateral sclerosis (ALS), multiple
    sclerosis (MS), Huntington’s disease, epilepsy, diabetes, stroke, and
    various forms of dementia. http://piccadillybooks.com/stop-alzheimers-now.htm

  • Scott B

    I’ve cared for dementia patients, as a care worker at a home, and for my mother until she had to go in a home because she was beyond the care I could give her.

    The thing I always found was a help was making their room look as much like their home as possible. A favorite chair, art and family pictures, clothing (stay away from hospital gowns), a blanket. They crave habit and familiarity.

  • Lee_on_Norfolk

    I lost my mother to dementia last Sept.  She was 80, and the last 5 years of her life ranged from bad to awful.  She lost the ability to accurately answer whether she was in pain or not.  How do caregivers provide comfort then?  When someone can’t speak, how do you “know who they are?” And then there are the combined effects of frailty and immobility.

    The aide ratio was 1 staff to four residents, and still that was not enough to prevent my mother from forgetting she could no longer walk, suddenly standing, falling, and breaking her hip. Most of the aides who cared for my mother earned only $10 an hour.  Yet the cost of her dementia facility was huge.

    I think hospice should be involved early with dementia patients.  Hospice can help family think through what medical procedures do not make sense for someone with dementia.

    • amy collupy

      hospice does not get envolved. the home my mom was in was great, they took great care of her and me when some of the changes got to be to much.

    • Shag_Wevera

      And a 1:4 ratio is rare.  Where I work now is 9:1.  I,ve worked at places that were 20:1.  I have heard of 40:1.

  • amy collupy

    the point that I would like to make is that people with dementia when they loss an ability to do a function it does not come back. I have watched my mother for 6 years loss her mind slowly and regress to a child until it took her life. The problem with the system now is that you can not get help for them at home. You pay for any help in the home, so you end up putting them in a nursing home, because you no longer can do it 24 7.

  • Davesix6

    My mom passed in October 2011 at age 82 after suffering for about a year and a half with dementia that accelerated after a broken hip, and required she spend the last 11 months of her life in a very good Nursing Home with a wonderful staff.

    The Nursing Home we chose, like Beatitudes, believes that each person should continue to be treated as the individual they are.

    In spite of this horrible disease, Mom never lost her smile, for long, or her thoughtfullness and caring for others. It’s just who she was. And the attitude of the NH allowed us to honor her as an individual until she died.

  • SuziVt

    It sounds wonderful to make an environment catered to the personal needs of the person stricken with dementia. However, with limited funds, how does a facility provide this individualized care to each of 25 – 50 patients/residents? Often a high functioning resident can be very demanding, as well as a middle functioning resident. Whose needs get set aside, for in the real world, with the staff at a traditional assisted living home, time and energy are not freely available.
     Also, what if , as a vital younger woman (my mother-in-law), would have shuddered at the thought or image of her as an over- weight woman with dementia. She always took so much pride in her appearance. Now with alzheimer’s, I would hate to see her put on excess weight, after being handed a cookie each time she asks for one, because she can’t remember that she already had lunch thirty minutes ago. I see this happen over and over. I work in one of the better homes, and I see residents fed every time that they’re confused and ask for a an extra meal or desserts, not remembering they just had a large meal and dessert. Ultimately, they end up twenty pounds heavier, as well as further into dementia. My question, what takes precedence, her original requests to remain attractive and keep her dignity or serve another dinner at midnight and snacks throughout the day to keep her placated for the moment?            

  • myblusky

    I was just told a week ago that my mother probably has dementia. I feel like I’m staring down the barrel of a gun.

    I have noticed her decline over the past year, but passed it off on some other ailments she had. Those ailments have since been healed, her memory has grown increasingly worse.

    I’m trying to formulate a plan in between the never ending tears. It’s overwhelming.

    • Lee_on_Norfolk

       It is very hard news to hear.  Dementia is complicated and different from so many illnesses we usually face, so most of us are unprepared.  Try to get advice by talking with people who specialize in dementia.

    • SuziVt

      Lee is so right. Hopefully you can obtain some better guidance than we had. We took my mother-in-law to the  Cleveland Clinic. They didn’t want to use the term alzheimer’s. So while we tried to be honest about her dementia, the staff called it mild cognitive impairment. That’s all she needed to hear to feel that she was vindicated, as far as she was concerned, she was just getting older and forgetful, even though she couldn’t remember eating within fifteen minutes after. She was single and had always been very independent. She also lived a long way away from two of her children. It was agonizing to watch her spend all of her money on clothes and sweepstakes, eventually going into debt. Finally, we were able to get guardianship and eventually move her into a home. Cleaning out her home was when we finally realized how bad she had been, and for how long.

      We feel like our experience was far short of ideal, and if the professionals could have told her early on that she probably did have alzheimer’s it may have helped. At the very least, we wouldn’t have felt so guilty taking control.   

      • myblusky

        I’m so sorry for your experience Suzi. People just try to do the best they can. Hind sight is always 20/20 and I’m sure I’m already on the road to making decisions I will regret later.

        I don’t understand the obsession with lotteries and sweepstakes. My grandmother did this as well. She called it her second business.

        I hate this disease. It is one thing for a person’s body to waste away – we are all diminishing with age, but the wasting of our minds and are memories is just cruel. Nature is so stupid to have even invented this disease.

  • burroak

    Interesting topic, makes me wonder how America cares for their elders; in an age where Madison Avenue permeates its message of beauty, youth, and constant-smiles, how will younger Americans handle this important and growing social issue.
    How do Americans view their elders? 
     

    • myblusky

      It is agonizing and I think most people – no matter what their obsession is with youth – love and care for their parents and don’t want to see them whither away in a nursing home.

  • Mariposa40

    I wonder if it’s common for a person to lose his or her ability to empathize with others or to understand the needs and interests of another person (e.g. well known family members, friends, relatives living with them, etc.)   I understand the need to lower expectations for this kind of functioning (emotional as well as cognitive), but I don’t know if loss of empathetic response to another’s experience is an early & likely permanent loss quite early on.

    • Lee_on_Norfolk

       I saw this loss of empathy with my mother.  It was hard for me.  I think the person with dementia cares less about everything, for example not caring about previous interests like politics.

      I wish I had looked for a good practitioner who could answer this kind of question for me.  I encourage you to find someone to help you through this difficult journey.

    • myblusky

       I had noticed this with my mom as well over the past year. I was only recently informed that she probably has dementia. It is slight at this point, but it is progressing. I feel tired after talking with her sometimes. I argue my point over and over to try and make her care or to at least be interested. A year from now it will be worse and a year after that even worse. I haven’t listened to the broadcast yet, but I hardly see how there can be much joy in all of this.

      It’s like aging in reverse. I guess this is why they call it “a second childhood”.

      I feel for you Mariposa. I’m looking into a support group or individual counseling.

    • rkean

      Mariposa40,
      As a nurse who worked with many families caring for elders at home with dementia, I think this kind of change or loss of personality is the hardest one to cope with. And you’ve noticed another aspect of dementia- that one part of mental functioning can be very little affected while change in another is major. If your mother hasn’t been evaluated for depression that could be a good idea since depression in combination with dementia can be difficult to see. My mother had a vascular dementia and I can remember the moment that I realized that I was really responsible for both sides of the conversation. The loss of the relationship we used to have was a big one. It is also difficult because as a primary caregiver one doesn’t have a lot of time or energy to invest in other, more nourishing relationships. A support group would be a big help, or therapy, or any activity that you really enjoy and that feeds your soul. All the best.

  • http://www.facebook.com/profile.php?id=599875624 Carolyn M Bell-Patterson

    Wonderful work!  All Dementia, compromised persons should be so blessed to have care like this.  Thank you Tena!

  • nycXpat

    Dear  Tom – you are blessed with great fortunes of having wonderful guests and callers who are able to speak and think for themselves.

    As a listener, I would consider it the biggest of favors if you let callers and guests speak more and if you spoke less. I would specifically appreciate it if you would manage to refrain from rephrasing, reframing, and/or repositioning the questions from the callers directed to the guests.

    While sometimes helpful, in most cases the callers do manage to ask the question (with context) that they want answered or present the point that they would like the guest to discuss.

    • Jay Schiltz

      I disagree!  Tom does a wonderful job of moderating and getting as many calls in as possible.  His paraphrasing is not a waste of time to my mind.  I think it gives the person who is being asked some time to phrase an answer.  It also helps Tom to understand the questioner’s intent and lead the conversation further. 

  • Brilindy

    A New Way to Care for Patients with Dementia…  This concept has been discussed for at least 10 years.  It is not new.  It may only seems new because it exists in so few places.  I am an RN with over 30 years of experience and with many nurse friends who have worked in Assisted Living and Nursing Home settings.  I also recently cared for and lost a loved one to dementia.  I have very little, if anything, good say about the way we care for people as their lives are affected by illness of all types, not just dementia.  If a person has dementia and can no longer be cared for in their homes or by their family, they do NOT belong in an Assisted Living home, even if they have a “Dementia” unit.  There is no skilled nursing care in an Assisted Living.  NONE !  These people need someone who can assess them, when they are having condition changes and prevent them from unnecessary complications.  When you are in an Assisted Living, you have nurse aides, but you do NOT have the safety net of a nurse.  That leaves nursing homes.  I was dismayed that the actual staffing ratios of the Beatitudes Campus were not discussed in this interview, but then again, it is a Retirement Community, in which only those with financial capabilities, can reside.  It was not a nursing home.  From all of my personal and work experiences as well as those of my nurse friends, I will tell you that 1 nursing assistant can NOT provide for the basic needs of 12 – 22 disabled human beings.  The day shift aides get as many as 12 patients each to care for.  The State Regulations in Massachusetts do not specify how many patients an aide can have, on any given shift.  The State Regs do, however, have regulations for Assisted Livings, Adult Day Health Programs and Child Day Cares.  Just not for the care of our most vulnerable citizens.  My loved one received the worst care imaginable.  He was injured multiple times, lost weight rapidly, lost the ability to walk very quickly and had to were a “brief” within 1 week of admission, because there was not enough staff to care for him.  When I reported it to the nursing supervisor, the director of nurses and the administrator, NOTHING was done.  I did not have a choice as to which facility my loved one got admitted to.  He was rejected by the “better” homes because he no longer had the money to pay privately.  The one he ended up in was the only one to accept him.  People do not know this.  If you have lost your life savings due to a debilitating  illness, and are on a Medicaid program, you don’t always have a choice.  You can also be denied a bed in a nursing home based on your age, the level of care you need and if you have any psychiatric issues, such as anxiety or depression.  It is very discouraging.  I will not go into all of the details about the terrible care I bore witness to, but please, please, please be aware of what is going on in your loved ones facility.  Ask the aides how many other patients they have to care for on that shift and speak up when things are not how they should be.  In addition to this, make sure you contact the Ombudsman associated with your facility. An Ombudsman is a person who’s job is to take complaints about nursing facilities and help you to resolve these issues.  They are required, by law, to post this persons name and contact information.  You can also report unsafe care to your states Dept of Public Health.  

  • Devin McMusters

    What a heart-wrenching version of Rhinestone Cowboy.  You can feel every ounce of despair and tiredness in Glen’s soul.

  • http://www.facebook.com/nan.davenport Nan Davenport

    My father lived very briefly in the “Memory Care” wing of the assisted living facility where he and my mother had lived independently for several years. After his death my mother realized that the bill for his care there for 3 weeks was $7,000.
    There was nothing special medically about his care that contributed to the expense.
    The care was excellent and in line with the best practices outlined in the story…. but not in reach financially for the VAST majority of folks (and for even my fortunate parents had he lived there longer). I think the story of this very laudable progress in elder care  is missing an essential element if it doesn’t address how accessible or not this new approach is to real people with dementia who do not all have limitless financial resources.

  • Lillian Hanke

    I am a librarian and managed and participated in the care my father received at home after he got dementia as the result of a stroke.  He had purchased long term care insurance just before he turned 80.  He was just past 90 when he had the stroke and the long term care insurance made it possible to care for him at home.

    I was hoping to hear that two newer ideas were tried which have given me a lot of hope:

    1) There is a doctor in Arizona who says that when someone comes to him with concerns about memory loss and he treats them with Vitamin B-12, they never go on to get full blown Alzheimer’s.  Today I read in an article about mental health by Dr. Mercola.  He said, “Vitamin B-12 deficiency can contribute to depression and affects one in four people.”  People past age 40 sometimes lose their ability to produce intrinsic factor which is required to obtain Vitamin B-12 from food or oral supplements.  Injections, sublingual tablets or patches are other ways to get the vitamin which don’t require intrinsic factor.  Patches are especially useful for someone with dementia but they may need injections.

    2) Read the book _Alzheimer’s Disease, What If There Was a Cure?_  by Mary T. Newport, MD.  Mary’s husband, Steve, developed early Alzheimer’s and as he became less and less able to function normally, she searched for something to help him.  What she found has helped him improve and stabilize.  The solution was coconut oil which provides ketones.  She also has a website:www.coconutketones.com  This is a developing story as research is being started in Florida.  I have read a blog on her website and found it very exciting.  Also there is one chapter in her book which presents letters she has received from caregivers who name various kinds of dementia which responded, including early onset and late onset Alzheimer’s.  This nutritional solution is also helping numerous other ailments that originate in the brain such as ALS, Glaucoma, Huntington’s Disease, Parkinson’s Disease, and even Peripheral Neuropathy judging from the letters she included in her book.

    Thank you for the program and the opportunity to comment.

     

  • davee44

    I am a Senior citizen I am going to blame the Seniors on this issue, here is why

    1. People are still waiting for Billion dollar big pharma drug makers to “give” them a drug to stop the illness. Big Phrama wants money and does not care about you

    2. Families do nothing but accept an Alzheimer’s diagnoses but do not attempt to use natural cures. Instead they feel sorry for themselves or their loved ones

    3. Walks for the cure are a waste of time to make money, take the illness into your own handsSee here http://malalzheimer.blogspot.com/2013/03/stop-waiting-for-drug-makers-to-reverse.html

  • Karen Scribner

    There will never be a cure. Alzheimer’s must be prevented. Read up on the news about iron-caused plaque found in autopsied brains. I bet the increase in Alzheimer’s can be correlated with the rise of iron-fortified wheat, organic included. Also with wheat being pushed for every meal of the day, even in hospitals.

    • Regular_Listener

       That would be nice if you were right, but I’ve never heard of this before.  Can you back this up with something?

      • Karen Scribner

        I just went to ixquick.com and searched “brain plaque iron”. Up came plenty of links including those from private and government news sources. I learned of it from one of the few newsletters that I get, most likely Dr Mercola, but I am not certain that is where I read it.

        • Regular_Listener

           I looked it up online.  It appears to be a complicated issue.  Too much iron in your diet is bad, but it is not clear how much is too much.  You need more in your diet when you are younger, and less as you age.  Be well.

  • Regular_Listener

    I wanted to say thanks for another important program, and it is one that I can speak to personally, since I am now seeing a couple of older relatives struggle with dementia, one of them from a serious case of alzheimers.  A couple of comments:

    The economic impact of these illnesses can be very serious.  I have now seen more than one case of a family’s life savings being eaten away by the $8,000 a month cost of keeping a dementia patient in a good quality home.  So much for leaving a nest egg to the kids.  When the money runs out, the profitable health care company boots the geezer over to the state.

    The guests here were clearly very devoted caregivers, but these companies often hire untrained, uneducated folks for $8-10 an hour.  Most of them do a good job of course, but there are cases of theft and abuse.

    It seems to me that this system could be improved.

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