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Concord residents had a terrific opportunity to learn from one of the nation's leading Alzheimer's researchers last night as Dr Robert Stern, co-director of the Center for the Study of Traumatic Encephalopathy at Boston University's School of Medicine, spoke at the Concord Council on Aging. Stern, an excellent speaker, filled evening with both useful information and hopeful stories. I knew we were in for a good evening when he started off with what most would consider a professional and political No-No: he told a joke about a man suffering from Alzheimer's Disease. And his point was well-taken: successful Alzheimer's caregivers have to have a sense of humor.
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Karen Tannenholz works in our office, and last summer she faced the kind of sudden medical emergency we help many people through. Stressed families often imagine their circumstances are unique, but Karen’s story reveals threads common among many: feelings of growing confusion, helplessness, stress, anger, and even humor are all normal. Ultimately, deeper appreciation of each other can emerge as we navigate together through some of life’s most difficult passages. To hear Karen’s story, click 'Read More' below:
Planning elder care is fraught with emotional minefields. Perhaps nothing is harder than when dementia or Alzheimer's strike, and a loved one’s skills or judgment has degraded and family action is required. This may mean taking away car keys, insisting that a caregiver comes part of the week, or that the elder move to live in a facility. This is always easier if you know that your parent, when entirely competent, had expressed a preference for how to handle the situation. The trouble is that we find that many families have not made such plans.
This is the first of a series of blog posts on lessons learned on navigating that difficult terrain. In future posts, we will address how to handle situations when someone’s competence has declined due to dementia, stroke, or other factors. For today, we will assume the elder is competent to make decisions. This leads to our first recommendation:
Download a flyer for this web conference here
Caring Companion Home Care of Concord, MA and the nonprofit National Private Duty Association (NPDA) will host a consumer education web conference entitled Depression and Older Adults – What Every Caregiver Should Know on March 13, 2012, at 8 p.m. EST. The live and interactive program will provide advice on how family caregivers can work with professionals to identify this condition and develop an effective plan of care for a loved one with depression. Caregivers will learn how to identify key issues and problems, locate needed experts and resources, and outline a plan to provide the best care for a parent. The event is free of charge and anyone can participate.
“Unrecognized, untreated depression is widespread among elders, who may present somewhat different symptoms, and who may need different types of treatment than younger people,” said Deborah Bier, PhD, director of the Concord office of Caring Companion. Bier holds a doctorate in therapeutic counseling, and has spent more than 20 years working with people of all ages with physical, cognitive and emotional disabilities. “Effective treatment can bring about an amazing improvement in quality of life and ability to function. This webinar is the type of increased public education and awareness that’s sorely needed.”
Where do families turn when they realize that a parent’s memory is fading? Dealing with the emotions surrounding the onset of Alzheimer’s disease, which is the most feared illness in the U.S. after cancer, is difficult. The MetroWest Alzheimer Partnership, in collaboration with the Alzheimer’s Association, is hosting an educational program that is free and open to the public on Saturday, March 31st at Whitney Place in Natick.
Concrete help for families can be elusive as they struggle to provide daily caregiving, research local resources such as residential and day programs, and find local support networks. Especially difficult for families is when their loved one starts to exhibit some of the troubling behavior commonly associated with Alzheimer’s disease.
The event features nationally recognized Alzheimer expert, Paul Raia, Ph.D (above right).
Note: The following was published in our monthly column "Living and Loving: Elder Care in the 21st Century" in Gate House News' Concord Journal. We will continue this theme of dementia in this blog with periodic articles on the subject.
The popular cultural view of Alzheimers Disease and other dementias is that they are all about pain, tragedy and heartbreak. But this is only part of the story -- stop there, and we are robbed of real sweetness.
The wisdom that care partners (family, friends and professionals) can glean from people with memory problems can be profound. If viewed through an all-too-often missing lens, and by utilizing known best practices, time with such folks can also be enlightening, love-filled and satisfying.
Here are five life-affirming lessons I've received from “Habilitation Therapy,” the best standard of care for those with dementia, their families and professional caregivers. I believe that what helps dementia patients feel happy, calm, secure and fulfilled actually represents vital life lessons reduced to their essence, revealing wisdom of the ages.
Hi Deborah, I read your article online about normal forgetfulness and wanted to ask where you would turn if you were 44 and worried about this. I do live with quite a bit of stress (divorce, own business, a somewhat mentally abusive boyfriend, etc), and have always been a multi-tasker who doesn't like to focus on details. Since high school, I've been awful with names and memories of long term events.
So it didn't concern me when my boyfriend became concerned I didn't remember seeing a movie (I slept through it), or that we discussed something. We had a rocky relationship and I thought he was excusing his behavior. Recently, though, I had an intern work 3 months for me, and when a month later I tried recalling his name, I could not for the life of me remember until I looked it up. If you think I should worry? I've mentioned this to my primary and they excuse it to juggling.
On the bright side, I've noticed I am able to remember more things now that I've left the boyfriend, but I want to double check... Thank you!! -- Signed, Worried
I'm middle-aged, and I go through this all the time: where are my house keys... purse... car in the parking lot? How did I forget those printouts for the meeting... to defrost tonight's dinner... to move the wet wash to the dryer before it gets moldy? Sometimes, I'm suddenly concerned I've forgotten an important meeting, but can't recall quickly what day of the week it is today -- much less when that appointment was to take place -- which sends me scrambling for my calendar.
Now, I was about to make an important point here, but I've forgotten what it was... darn! Looking above for reminders... oh, right!
We middle-aged people caring for parents, children, spouses, paid work, projects, community work, and somehow ourselves often become forgetful and distracted. Many of us worry that we are acting uncomfortably like our parents and other elders who have been diagnosed with Alzheimer's Disease and related dementias. Do we have it, too?
Thanks to The Concord Journal for publishing a story about us in in today's edition. It's about how our Dr. Deborah Bier has become certified to teach the Alzheimer's Association's home care giver training course, and how vital it is to have trained caregivers for such patients. Read it here online.
You want your loved one with Alzheimer's Disease or related dementias (ADRD) to be cared for at home by someone experienced in meeting their needs, right? Someone trained specifically to care for those with dementia. Of course!
But does experience really mean that home caregivers are offering the care that's truly right for people with such diseases? All too often, the answer is: NO. Caring for dementia patients is specialized and requires training for a set of skills all-too-often missing in the homecare setting.
Did you know that dementia-specific training is not included in home health aide or nursing assistant certifications? "While many home care aides have experience with dementia patients, few are actually adequately equipped to do so," said Deborah Bier, PhD, the director of Caring Companion Home Care's metrowest Boston, MA office located in Concord, MA. "As a result, many don't know or use the best, most proven approaches -- the very ones that dementia patients and their families most benefit from." The result can be challenging behaviors difficult or even impossible to manage in the home setting. But proper training for homecare workers can help make the difference between patients being able to stay comfortably (and less expensively) at home or being institutionalized.
Joanne Koenig Coste, author of Learning to Speak Alzheimers, a nationally-recognized expert on the living with the disease, will speak at Newbury Court in Concord on Wednesday, August 10 in a presentation free and open to the public.
Coste has been an outspoken advocate for patient and family care for Alzheimers patients since 1973. She is the ground-breaking co-inventor of the compassionate, easy-to-learn and common sense approach to Alzheimer's care known as habilitation. Using this method, patients and those who care for them devote themselves to making life as comfortable and pleasant as possible for both the patient and family.
She is constantly in demand for lectures and consultations nationwide. "We are so fortunate that she is coming here", said Jim Reynolds, CEO of Caring Companion Home Care headquartered in Concord, MA. "Many of our client families have a loved one suffering from dementia and we recommend her book over all others. I found the training I took based on her work to be the most valuable I have had about dealing with Alzheimer's sufferers."
Habilitation has won praise from health care professionals. The founding director of the National Institute of Aging, Dr. Robert N. Butler, wrote the introduction to Coste's book, and she estimates that at least 100 nursing homes and assisted-living centers have adopted her methods.
"When I first began my work in dementia care over 20 years ago, the philosophy of care and approach centered on Reality Orientation," says Claire Henry, Dementia Specialist and principle of Caring Resourcesin Norwood, MA. "The philosophy of Habilitation Therapy has done tremendous service for the dementia client, particularly in regard to their need to preserve 'personhood'. "Coste is currently in private practice as an Alzheimer's family therapist. She also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.
This lecture will be held at 4 pm in the North Community Room at Newbury Court, 80 Deaconess Road. Reserve your seat by calling Deb Boyden at 978 402-8223.
"ABSOLUTELY NOTHING WHATSOEVER, YOU NINCOMPOOP!" you may be right now screaming at this blog, especially if you are caring for a loved one with dementia. "Stress is CAUSED by dementia, not reduced by it!" you may be continuing to rant. I hear you (really). But bear with me a moment and let me draw some threads together to make this point.
Dementia patients often have a diminished sense of time. A minute, a day, an hour, a year -- or a decade -- may all seem to flow by at the same pace. As the disease progresses, they have difficulty remembering things over increasingly short spans of time. And they can get anxious and depressed anticipating things in the unknown of the future. To me, this boils down to this truth: people with dementia do their best being in the moment. Helping them stay in the "now" with pleasant and purposeful activities calms their moods and brightens their lives. And anything that accomplishes both of those things can improve their functioning.
We meet regularly with other firms serving the Massachusetts elder care and home care market to discuss how we can work together to serve our clients better. At one meeting recently, I was especially impressed with the elder law firm of Summers and Summers in Acton, MA. They are trying to think about elder law and elder care in new ways to serve a changing market. This is the kind of thinking required to address the demographic and market changes facing us today.
Summers and Summers has expanded their elder law practice to offer Geriatric Care Management services as well. Attorney Cathleen Summers is a Registered Nurse and a Geriatric Care Manager as well. We know many outstanding GCMs, but most are independent or work at hospitals or home care agencies. Combining elder law and geriatric care management is rare -- unique, in our experience -- but makes a great deal of sense. The job of a Geriatric Care Manager is to look at and to manage the "big picture" of a family's elder care needs. This usually includes estate planning and other legal services, many of which are offered on a transaction basis without developing a relationship between the law firm and the family.
By Guest Blogger, Roberta Carson, Founder of ZaggoCare
June 29, 2005: the day our vibrant 17 year old son Zachary (photo at right, I'm beside him) was diagnosed with an inoperable, terminal brain tumor and given 4-6 weeks to live. I was completely shocked and overwhelmed by this horrible news, barely able to manage even the simplest of tasks. However, as anyone who has been a patient or family caregiver knows, the job of navigating through the medical world is enormous and very stressful. We are not trained or prepared; we are thrust into a whirlwind of appointments, learning medical terms we cannot pronounce, making treatment decisions without fully understanding all that is involved, taking care of the daily needs of a patient, and more, all while trying to maintain a sense of “normalcy”.
(This post is a part of a series; the first one can be found here.)
Here again are the four important take-aways from Dr. Paul Raia's Q&A session with healthcare professionals dealing with dementia that I want to talk about here:
I was very interested in question #2 , in fact, I would have asked it myself! His answer will allow us to also cover the third take-away about depression and dementia here, because the two are deeply interwoven.
When it comes to fulfilling our greatest potential as human beings experiencing aging, do we really know what truly excellent aging looks like? Just what is possible for elders? How much resilience and adaptation to change are possible as we age? How many unfounded assumptions are we making about what is possible for us as we age, despite our imperfect health? And how do those assumptions keep us from helping elders from experiencing the best lives possible?
I am of the school that says, "we know a lot less than we think we know," and every day I work to provide home care and family support through CCC, I have to admit: even a really, really, REALLY open-minded and optimistic person like myself -- a person who absolutely thrills at having her mind expanded when it comes to the possibilities of human potential -- even I have limiting assumptions about aging that are much better discarded.
Which is why I just love the four links I'm about to pass along: they each remind me that we never know what is truly possible... that it's likely what we believe is the outer reaches of human aging today are going to be considered laughably limited in 10 years.
Just two-and-one-half weeks after we published a blog post entitled Over-Prescribing for Elderly Labeled a "Disease", the Boston Globe publishes an article called Mass. aims to cut drug overuse for dementia. Thank goodness, this has come onto the Commonwealth's radar! The Globe article begins:
State regulators and the Massachusetts nursing home industry are launching a campaign today to reduce the inappropriate use of antipsychotic medications for residents with dementia — a practice that endangers lives and is more common here than in most other states.
I believe it's important to keep this thinking going beyond those in nursing homes. My prior post about overmedication was about community-based elders said in part:
Archives of Internal Medicine (see the study abstract here) showed that it was possible to safely and significantly reduce the use of medications in elderly patients living in the community (as opposed to in care facilities). In fact, almost all patients in the study had nearly 60% of their medications safely discontinued, with very, very few needing to have these drugs re-prescribed. As a result, 88% of patients reported improved health! "Polypharmacy itself should be conceptually perceived as 'a disease,' with potentially more serious complications than those of the diseases these different drugs have been prescribed for," the authors write.
Last month, I volunteered at the ARTZ "Alzheimer's at the Movies" event held at the Coolidge Corner Theatre in Brookline, MA. This interactive film program is a one-of-a-kind experience designed for people with memory loss and their care partners. During the presentation, short film clips from classic films were shown, followed by audience discusssion and reminiscence, guided by moderators. There were (I'm guessing here) about 300 dementia patients plus numerous caregivers. It was a fabulous experience for everyone, and I strongly encourage your checking out the repeat of this event on December 14, plus their other events.
ARTZ is Artists for Alzheimer’s™, an initiative of the Hearthstone Alzheimer’s Foundation, that draws on the support and collaboration of artists and cultural institutions, as resource, to share, educate and inspire. Their underlying premise is that the emotional engagement available through the arts reach and enliven Alzheimer's patients in ways nothing else can.
I came away affirmed and with more experience in 5 crucial things I already believe about dementia. I want to share them here because we don't see them often enough in print, and because they each can make a real different for those living with dementia and their loved ones. These are:
On Thursday October 21, at the Concord MA Council on Aging, we will again present our popular talk 21st Century Caregiving: Essentials for Caring for a Disabled or Aging Loved One. Our comments will be followed by a question and answer period.
We have given this presentation several times and it is always well-attended. Come and learn how the new challenges and opportunities of aging in the 21st century can come together to benefit elders and those with disabilities. “21st Century Caregiving: Essentials for Caring for a Disabled or Aging Loved One” is a free lecture and community service. The presentation starts at 7PM at the Harvey Wheeler Center, 1276 Main St, Concord (map).
It seems to clear to me after 20+ years as a mental health clinician, plus one year working in this position at CCC, how ignored mental health problems are in the elder population. Ignored, misunderstood, and brushed off as of little importance would be more accurate.
The emotional life of people has long been the "poor stepchild" of medicine, so I've seen this problem arise in all ages in my private therapy practice. But the real tragedy of it in the elderly is that for some unknown number of dementia patients, it's connected with vascular dementia. If they are treated properly with anti-depressants, you not only address both their depression and anxiety, but you might see their whole cognitive picture improve. And that improvement may be dramatic. I've seen it happen, and it's just a great joy to behold.
And even if it's not a case of vascular dementia, why not treat a very understandable depression and anxiety? If the person is aware that they're not functioning cognitively, well, it's enough to make them depressed and anxious. People deserve help in with this. It's simply a quality of life issue.
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