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.

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Anyone who works at a Massachusetts home care agency is surrounded by a wealth of resources, but none of them is more valuable than Joanne Koenig-Coste, the nationally-known author of Learning to Speak Alzheimer's.  Joanne spoke recently at Newbury Court, an assisted living facility in Concord Massachusetts, on her passionate devotion to people with Alzheimer's over the past 40 years.  At Caring Companion, we recommend her book over all others to families and those who work with Alzheimer's people.  Anyone who has heard her speak knows that her compassion and energy flow freely from her, and many more ideas flow from her than can be captured in a single blog post. Rather than try that, I have captured three great ideas from her recent address. I'll blog on others at another time.  So for this week, here we go from Joanne:

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Challenging Behaviors and the Dementia Patient

June 8, 2011, 8:00am–10:00am
50 W Main St, Hopkinton, MA
Golden Pond Assisted Living
50 W Main St, Hopkinton, MA 01748
Breakfast: 8 am
Presentation & Q&A: 8:30-10 am
RSVP to Golden Pond by June 6 at 508 435-1250

Sleep disturbances… resistance to care… suspiciousness… sundowning… hoarding… rummaging… These challenging behaviors can be frustrating, frightening, and exhausting for families and caregivers of dementia and alzheimers patients.

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The new “Homestead Advantage Program” is being offered by Caring Resources of Norwood, MA. This program provides a cost-effective approach to dementia care and is aimed at helping dementia patients, their families and caregivers create the right environment and enable meaningful relationships.

Homestead Advantage encompasses individual caregiver education, support, guidance, care planning and appropriate referral sources to best meet the needs of the dementia client. This program includes a personalized, at-home assessment by a Certified Dementia Practitioner, a Geriatric Psychiatrist, and a Licensed Independent Social Worker to meet the clinical, social, and environmental needs of the dementia client.

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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”.

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(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:

1. Four things that slow down Alzheimer's progress in the early stages (discussed here)
2. The dementia diagnostic process: is it important that patients go through it? What does it involve? (discussed in this post)
3. Depression and dementia (discussed in this post)
4. Two books he recommends most for families to read (discussed 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.

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On February 1 --  despite the start of yet another snow storm! -- a lovely group of professionals gathered to hear Paul Raia, PhD of the Massachusetts Alzheimers Association speak to the Metro West Alzheimers Partnership, hosted at Traditions of Wayland, MA. This was primarily a Q&A session -- what types of questions did we need help answering for ourselves, patients and families?

It was a real treat to have an opportunity for such a free-ranging discussion with Dr. Raia, who is both a delight as a human being, and a master source for such information. Also, it was a chance for group brainstorming of common challenges, gathering the experience and wisdom of all the professionals in the room -- which added together among the 40 or so of us was probably most of the way to the 1,000-year mark!

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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.

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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.

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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:

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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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The needs of a large and growing segment of home care clients differ dramatically from those of the typical client of the past 30 to 50 years, but the home care industry has not adapted to them.  That unfortunate reality has left a large group of clients under-served by expensive care plans.  As an industry, we can do better, but we have to be willing to change the way we view and serve our clients.

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NPR's Aging At Home series cites Caring Companion as a thought leader.

Many of you probably heard National Public Radio's popular series this week Aging At Home.  We were enormously proud to learn that NPR selected Caring Companion Connections as one of only four resources they listed on their web page as Additional Resources for the first episode.  Clearly, NPR has realized what many already know: Caring Companion Connections is a leader in providing wellness-focused home care and innovative, effective ways to help seniors age comfortably in the home of their choosing.

Find out for yourself! Download our white paper: Reimagining Home Care: New Needs, New Approaches .  See how home care in the 21st Century is different, and find out what every family needs to know before you choose your home care agency!

Click here to download the white paper.

Fall

"A home care agency just showed me how to reduce the cost of home care!  Now, how amazing is that?!"

Families are so grateful (if not surprised!) when we help them develop a cost-efficient plan to keep aging parents safe and comfortable in their homes -- even when it means fewer hours of in-home care by Caring Companion.  Finding effective  and safe ways to stretch the care budget is one of the keys to successfully managing elder care for your family.  People tend to move from crisis to crisis, addressing each problem independently in a fire drill mode. Sometimes it helps to step back and think in an organized way about what's needed. And that's where we always start with each household.

For example, here are the top threats to health and safety of elders living alone:

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Alzhiemer's

“So what’s it like to ride 100 miles with 4400 feet of vertical climb on a really hot, humid day in July?”

That’s the question I heard most often following Saturday’s Alzheimer’s Memory Ride.  And I'd like to answer it here: like many athletic challenges, the key to success is psychological – you have to be crazy! Fortunately, I was the right man for the job, and was joined by more than 50 similarly-minded folks.  I’m not a skilled cyclist – Concord has dozens of people who ride faster and farther and more challenging routes than I do – but I do it enough that I knew I’d be fine, and I really enjoyed the ride.

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On Saturday, July 24, Caring Companion Connections will join hundreds of others at the Alzheimer's Association Memory Ride, as we work toward our commitment to a world without Alzheimer's disease. The Memory Ride generates awareness and raises money for Alzheimer's research.  We hope you will join the fight with a pledge.  Any amount helps. Don't think it doesn't matter; individually, none of us can cure Alzheimer's disease – but together, we will. Click here to donate.

CCC will sponsor a rider (that's me!) for the 100-mile ride. It will be a difficult but doable challenge, just as curing Alzheimer's is a difficult but doable effort. We hope that you will also rise to the challenge and join with us and others by donating now so that the later years of our large aging population can be ever richer.

90% of money raised by Memory Ride participants funds grants awarded through the Alzheimer's Association's research grants program. 10% of the proceeds stay in Massachusetts and New Hampshire to help fund programs and services that assist families affected by Alzheimer's disease.

As a home care agency on the front lines of elder care, CCC focuses on wellness and on improving the lives of our clients and their families. We daily see first-hand how many of our clients and their families have been affected by Alzheimer's disease. We are committed to helping our clients live each day to its fullest, and to improving the lives of their families.  Please join us in this important effort.