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I have to confess. I am a list-maker. My excuse is that I am a visual and kinetic learner. Seeing the words in front of me and the actual movement of writing help me to remember what I have to do, or buy or who to call.
It may not be polite to carry a list of the following communication tips, but you can review them and try a few at a time. They are even useful in everyday life, especially when meeting new people.
While care for your loved one can become tedious and emotionally draining, if you can find one aspect that is pleasant, you can exaggerate it. One of our clients says "Bottoms up!" when dressing his mother with Alzheimer's. It has become their private game, repeatedly enjoyed by each of them.
Keep a genuine smile on your face. Yes, people can detect a fake smile. One of the last things people with dementia lose is their ability to read faces and recognize feelings.
Bend or sit down to reach their level. Lower your head. Standing or hovering is intimidating and scary. No one can focus when they are afraid. Be conscious of your body language; keep it open, calm and even joyful.
Try to speak in a calm manner with a pleasant voice, even if you don’t feel that way. If you sound angry or agitated, people will often mirror that feeling back to you and then some. In any disagreement, catch yourself and stop arguing. You will be surprised at how effective this can be.
I am often trying to get all of my thoughts (and opinions!) out at once, while speaking. I am often "nicely urged" to slow down. I then breathe between sentences and give others a chance to hear and then respond to my words. This will make a great deal of difference when speaking to someone with dementia.
Have you noticed that when communicating with the men in your life; the simpler, the better? Studies have shown that women multi-task much better than men! Keep your conversations about one topic and use short sentences.
Why is a very hard concept to grasp. It involves much greater thought than simple statements inviting conversation such as, "That dinner was delicious. What did you like about it?"
They can't remember. If people bring up memories, you can expand on those. But asking a person with dementia to remember is embarrassing for them and may make them angry. It is embarrassing for everyone.
I am learning to use these tips in my daily conversations. I hope they are helping others to understand what I am truly saying.
25 years ago, walking to an Ocean City, NJ beach with my three-year-old daughter, I sang at each street corner. "Stop, look and listen, before you cross the street. Use your eyes, use your ears, and then you use your feet!"
Approaching a person with dementia is significantly different than greeting a friend or family member. It is important for you to know that their brain is changing. They are confused or anxious. They may not remember you, that you were coming, or why you are there. To ensure that your appearance does not startle a person with dementia or put them "on edge", try the following, which is very similar to that little song:
Always approach directly from the front. Many seniors have poor vision and have lost their peripheral vision. Coming close to them or speaking to them from their side or from behind will disorient them.
The comfort zone for most Americans is six feet. This distance can vary by culture! In the US, a distance less than this 6 feet creates a stranger/danger response. Stopping will alert them to your presence.
Waving might be considered a universal motion of acknowledgement. A hand motion will direct their attention to you and is a second indication that you are approaching.
Establish eye contact from this distance and smile, invitingly. It is vital that they actually see you and that their attention is focused on you.
Call their name. Our names are the first words we learn. Even though our elders begin to lose short term memory and regress, we all know our names. Calling their names immediately establishes that we know them and they must know us. This connection is what we are looking for.
Approach slowly and extend your right hand to shake hands. Shaking hands is something Americans do throughout our lives to demonstrate friendship.
Once you have each other's hands, true communication, on a positive note, can begin.
This coming Friday, the Liberty Alzheimer's Partnership will host a fun evening of music to raise money and awareness for the Alzheimer's Association. Music of the 40s, 50s, and 60s will provided by the Golden Tones, a chorus of senior citizens based at the Wayland Council on Aging, and by the Vocal Revolution (formerly Sounds of Concord), an award-winning barbershop chorus. Singing along and dancing are not allowed - they are required!
It is an early evening (5:30pm-8pm), to allow families to bring members of all ages, from youngsters to those who may be suffering from dementia. Light supper will be provided. Location is First Parish in Concord, 20 Lexington Road.
It will be fun and inspiring, and for a good cause. We hope you will join us!
Liberty Alzheimer's Partnership Fundraiser Details
|DATE||Friday November 8, 2013 5:30PM - 8PM|
|ADDRESS||First Parish in Concord
20 Lexington Road
Concord, MA 01742
|TICKETS||Call Sally at Concord Council on Aging
Limited tickets will be available at the door.
The Liberty Alzheimer's Partnership press release follows below:
The Liberty Alzheimer's Partnership of Greater Concord will host an evening of "swingin' and swayin'" with music and dance from the nostalgic 40s, 50s and 60s. Join us to sing and dance the night away on Friday, November 8 from 5:30 to 8 pm at First Parish, 20 Lexington Road, Concord, MA. All members of the community are invited to this event, which is designed to be enjoyed by all ages. Individuals with Alzheimer's and related dementias, their caregivers, family members, friends and anyone who likes music and dancing is welcome!
The fun-filled evening will include music for singing and dancing by The Golden Tones, a chorus of seniors who love to sing songs from the past, and The Sounds of Concord, a barbershop quartet singing those golden oldies. Also enjoy a sing-along to our favorite songs by Jerry Hurley, trivia games and blast-from-the-past videos. A light supper is included.
Tickets are $10 per person and can be reserved in advance by calling Sally Lopez at 978-318-3012. A limited number of tickets will be available at the door, so advance registration is recommended.
The Liberty Alzheimer's Partnership is a group of volunteers dedicated to raising awareness and providing education about Alzheimer's disease and related dementia. The group also raises funds to help support the work of the Massachusetts/New Hampshire Chapter of the Alzheimer's Association.
Teepa Snow is a dynamic, inspiring, insightful coach for professionals and families who support Alzheimer's patients. She will appear in Newton on Wed May 29, 2013, to give a FREE seminar, entitled Essentials for Your Journey Together. This is a rare chance to see such a gifted speaker on Alzheimer's Disease.
At Caring Companion Home Care, we use videos of some of Teepa's training when we train our own caregivers to work with Alzheimer's patients. She is funny and empathetic, and her West Virginia accent stays in Massachusetts ears long after the video ends. If Alzheimer's is an issue in your life, take the chance to see Teepa.
Essentials for Your Journey Together
with Teepa Snow
Wednesday May 29, 2013
5:30PM - 8:30PM
Lasell Village at Lasell Collegede Witt Hall in the Winslow Academic Center
80 Maple Street
Auburndale, MA 02466
Teepa is a Fellow of the American Occupational Therapy Association, has received local, statewide, and national recognition for her expertise in geriatrics, dementia care and programming, and staff training. She has developed two training videos, published many articles, and presents locally, regionally, and nationally on a variety of topics and to a wide variety of audiences.
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.
Humor, Hope, and Help were his buzzwords for the evening, and he managed to address a frightening and complex topic in a way that was sympathetic and approachable. His primary message: Alzheimer's and dementia are not "just what it's like to be old." Some slowing is normal, just as we slow down physically. But confusion, memory loss, and inability to reason are not "normal aging" - they are signs of a disease, and with research, it is a disease that might one day be prevented or cured.
Data flowed freely: deaths attributed to Alzheimer's Disease rose 66% in the first decade of this century. More telling - it was the only one of the top ten causes of death that increased. Death rates for other top killers -- cancer, heart disease, even HIV-AIDS -- declined. This highlights the need for additional research and clinical trials. But the story is not all depressing, and he told several stories of families managing well with the disease. As we always say, you have to accept each day for what it is, but there remain many rich days in life even after the onset of Alzheimer's. The emotional life of most patients remains very rich, and their ability to connect with loved ones can remain strong even after cognitive deficits have become clear to those around them.
As a researcher, he made a plea for more funding and more volunteers for trials. "There's a wide range of trials at various stages," he said. "Anyone over 50, healthy or not, highly-funcitoning or not, can contribute." Some programs are as simple as logging into a web site to track various activites; others are full-blown clinical trials. All types of volunteers are needed, and you can easily find a trial to participate in at the Alzheimer's Association web page: Alzheimer's Association TrialMatch® . I have personally signed up for several trials via this web site and it is easy to use.
The evening was very well-attended - I would guess more than 60 people were in the room at the Harvey Wheeler Center. It was fascintating, fun, and hopeful. People who are interested in Alzheimer's Disease should be on the lookout for Dr Stern if he speaks again in this area. He is a valuable resource and we were lucky to have him in Concord.
Congratulations to our own Dr. Deborah Bier, PhD! The Home Care Association of America, the home care industry's largest trade organization, has asked her to deliver another of her popular series of webinars training professionals and families who are dealing with Alzheimer's Disease and Related Dementia (ADRD). In 2012, Debbie's first webinar was so popular that they immediately asked her to deliver three additional sessions on similar topics. We learned later that her sessions were being downloaded by agencies around the country to use in their training. Quite a compliment to her work, and a demonstration of the high quality we try to deliver at Caring Companion.
Debbie's trainings and webinars are based on a program developed by the Alzheimer's Association of Massachusetts and delivered through the state's Executive Office of Elder Affairs. We use the approach, called "Habilitation Therapy," in training our caregivers for dementia clients.
Details of the webinar are below.
Thursday April 11, 2013
2:00PM - 3:00PM
Alzheimer's Disease and Related Dementias (ADRD) require a many resources to manage on a daily basis, draining caregiver energy, time, finances and patience. But there are proven methods to make care easier, safer, and more enjoyable for both patient and caregiver. Learn some of these little-known best practices, used successfully by both professional and family caregivers alike.
Deborah Bier, PhD, is the director of care for Caring Companion Homecare in Concord MA and has been a holistic psychotherapist for 25 years. Certified by the Commonwealth of Massachusetts's Office of Elder Affairs and the Massachusetts Alzheimer's Association, she trains dementia caregivers and coaches dementia families. Her particular expertise is in helping multi-generational families apply wellness approaches to managing chronic illness. She holds a doctorate in therapeutic counseling, and is a widely published writer and speaker specializing in health and healing.
People familiar with Alzheimer's Disease and related dementias listened with interest last month as NPR reported recently (Alzheimer's 'Epidemic' Now A Deadlier Threat To Elderly) on the Alzheimer's Association release of statisitcs showing that Alzheimer's death rates are soaring, even as death rates from other diseases decline. The 68% increase in Alzheimer's deaths between 2000-2010 does mask some good news: other health factors like heart diseaes, which typically kill at earlier ages, are declining - leaving longer-living patients vulnerable to Alzheimer's as they age. Paradoxically, however, the only disease with a rising death rate and with no effective treatment and no cure or vaccine receives scant funding for research into solutions.
Because Alzheimer's rarely strikes until old age, many people mistakenly assume that it is simply an inevitable part of the aging process. Additionally, since its victims are almost always old while those of other diseases tend to be younger, there is a natural tendency to focus attention where it can add more years of life to the patient.
But using that "every dies of something" as a reason not to fund Alzheimer's research reflects ignorance of the problem. Healthy aging, and certainly a healthy brain, is possible until the end of life. Alzheimer's and dementia are slow and cause great burdens to sufferers and to their families. A decade or more of quality life experience is often lost by people ortherwise fairly healthy. Given the demographic trends and the number of people now at risk of developing dementia, the time has come for a dramatic increase in medical research for a cure or vaccine.
Hats off to Mary Baum, Nancy Crowley, and the team at Concord Park for their terrific PhotoVoice project! I attended the open on Thursday November 29, and it was very impressive. We had previously blogged about this project (see our post from October 31). The emotional power of the images and the descriptions reveal a lesson we always emphasize to the families of our clients and to our caregivers when we conduct training: although reasoning and language ability may decline, the emotional experience of people with dementia remains vivid. This is why it is so important to “meet them where they are.” Absent safety concerns, the immediate facts are irrelevant, but the emotional life of the person are real.
"It looks like a trough, so they won't escape. We used to have rubber ducks in the tub. The colors make it, and you can see one has a patch over his eye. The image makes me think of my childhood. I spent a lot of time with my grandmother and she liked things just so. I have fond memories of her and she lived to a good age. My aunt lived with her and she liked to cook and take care of people.
I came across a picture of my mother today. I don't have many memories of her. She died when I was six. That's why I spent so much time with my grandmother - my father had his hands full.".
-- Mary, Concord Park resident
I was especially struck by the photo and caption I have included in this post. The decline in language is evident. But look at the memories and emotions revealed in the caption that this woman dictated as she gazed at the photo! Most often, people surrounding her are probably unaware of the deep associations that everyday objects may bring to her mind. Those memories and emotions not doubt remain unarticulated unless she is lucky enough to have people like the staff at Concord Park and the PhotoVoice project, but they are nonetheless meaningful and deeply-rooted. This project is a reminder that with conscious effort, we can share memories and experiences with our clients and families that are rewarding on their own terms, just as they are today. Thank you, Mary and Nancy, for opening this window into the lives of these residents, and for the obvious contribution this program is making in their lives..
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 Alzheimer's and dementia in this blog with periodic articles on the subject.
The weeping elderly woman is pleading. “I want to go home! Please find out why my ride isn’t here!” Exasperated, her daughter snaps at her, “You are already home, mom! I keep telling you, why can’t you remember? You moved in with us last year!” More weeping, snapping, pleading and exasperation follow. Around and around this goes, several times a day. Both women end up beside themselves with frustration, sadness, anger, and fatigue.
While looking at books at their local library, a man suddenly jumps to his feet, announcing loudly to his wife, “I have to go to the bathroom, now!” Five seconds later, he wets his clothing, urine puddling around his feet. “I asked you to go before we left home and you refused! Why can’t you control yourself?! I can’t take you anywhere like this!” she says to him in despair and exhaustion. They are both embarrassed and ashamed, a wedge stands between them and tension hangs thick in the air.
Alzheimer's Disease and Related Dementias (ADRD) and the difficult, troubling behaviors that arise from these illnesses cause grief for families. Over their course, there can be many changes in their loved ones, and much work to attend to their many needs. Despite everyone trying their very best, all too often by the time the day is done, it’s been a really difficult one.
But what if there were enough periods of pleasure, connection, peace and satisfaction – and far fewer difficult behaviors – that the person with dementia and their family could call more days good than bad? This is both the promise and reality of Habilitation Therapy (HT): increasing positive emotional experiences while providing a set of effective tools to reduce difficult behaviors.
HT was developed at the Massachusetts Chapter of the Alzheimer's Association over the past 20 years. It is considered to be the best standard of care for all types of dementia. Sadly, it is not in as widespread use as it should be.
This approach focuses not on what the person has lost through their illness, but on their remaining abilities, aiming to create and maintain a positive emotional state through the course of each day. Their capabilities, independence and morale are thoughtfully engaged to produce greater psychological wellbeing. In this way, difficult symptoms can be reduced or eliminated, despite the disease’s progress.
This method emphasizes validating the client’s emotions, maintaining dignity, creating moments for success, and utilizing all of the patient’s remaining skills. Habilitation therapy helps caregivers have positive and successful interactions with their loved ones by optimizing and maximizing the care recipient’s strongest skills. The goal is not to re-habilitate the client to an earlier state of functioning, but to “meet them where they are” with the remaining skills they possess.
Every interaction with the person with dementia, every task performed for or with the client, and every aspect of the environment around the client can be thoughtfully selected or adjusted with habilitation in mind. Habilitation therapy can be applied in the home or institutional setting, and can be learned by family, friends and professionals alike. It’s best that every person who cares for a person with ADRD should be a part of applying Habilitation Therapy. This includes family, friends, and all types of caregivers.
HT is not rocket science. It requires learning some basic concepts and approaches, getting some practice, applying some creativity, and having a willingness to see ADRD though a – sometimes very – different perspective.
Last year, as part of their public health efforts to relieve the problems faced by Alzheimer’s sufferers and their families, the Commonwealth of Massachusetts and the Alzheimer’s Association developed a curriculum and trained some clinical staff in homecare agencies staff – myself included – to coach family and train caregivers in the use of Habilitation Therapy, reducing the care challenges they face. In a surprisingly few hours the basics can be taught. The application of HT can start immediately.
Habilitation therapy enables caregivers to enjoy time together and to share a relationship, activities, and feelings with a person with dementia. The satisfaction we get from forming warm bonds with our dementia homecare clients, and to help them have satisfying, peaceful days is what keeps us excited about this work. Applying Habilitation Therapy helps family members to also join this warm circle.
Tuesday, August 7, 5:30 pm - 6:45pm
Concord Council on Aging
Harvey Wheeler Community Center
1276 Main Street
Concord, MA 01742
Join the Massachusetts Alzheimer's Association for the Greater Concord "End Alzheimer’s Kick-off" meeting on August 7. Team up with other communities in Metrowest Boston as we work to end this disease that afflicts an estimated 320 Concordians!
Dr. Deborah Bier of Caring Companion Home Care in Concord will lead a discussion based on the Massachusetts Alzheimer's Association's "Habilitation Therapy," an innovative approach that helps families avoid common frustrating pitfalls that Alzheimer's presents, and how actually to learn to treasure the remaining days as they are.
John O’Leary, Marketing Chairperson for the Greater Boston Walk to End Alzheimer’s, will lead a discussion on ways we can increase Alzheimer’s awareness and participation in activities to End Alzheimer’s including this year’s Greater Boston Walk.
A recent blog post addressed how to conduct difficult conversations with an elder whose skills may be declining, but who is still clear-minded enough to reason. Today we discuss territory where you often must act more independently, because Alzheimer’s Disease and Related Dementia (ADRD) has compromised your loved one’s ability to choose wisely. This is thorny territory.
This situation reinforces the importance of our focus from last column: Start these conversations before they are needed. By the time Alzheimer’s or dementia strike, elders are at risk of making decisions that put them in danger they do not recognize. Advanced age and even the appearance of dementia are not a license to remove all sense of independence from the elder, but the family must be willing to act to ensure safety. And as difficult as it is, understand that you may have to act over the strenuous objections of a parent to keep him or her safe. That can be emotionally difficult even within the best of relationships. When parents have been capable, loved, respected (or even feared) for 50 years, the impact of having to step in and make decisions over their objections is jarring. This leads me to recommend:
These fiblets often feel unethical and uncaring, but in the service of keeping someone safe, they are not. A direct statement such as “We love you but you are unsafe alone because you might wander into traffic” will likely be humiliating or frightening and may be countered by vociferous argument. If the person cannot reason independently, do not try to have a conversation that requires independent reasoning.
Nearly all of us hope that in our parents’ last years, they feel well served by our care, and know we have done our best. We want their gratitude and their understanding. The tragedy of dementia is that it sometimes robs families of that experience. If you face such a situation, there are ways to mitigate its impact, but dementia is progressive and irreversible. If someone is unsafe and you await approval to take the action required, you are likely to allow risks to escalate far past the point of prudence. In this difficult passage of life, prepare yourself to act even if your motives will never be appreciated.Image: FreeDigitalPhotos.net
Caring Companion Home Care of Concord, MA was selected by the industry's most prominent national trade organization, the National Private Duty Association (NPDA), to deliver a consumer seminar entitled "When Dementia Strikes: Managing Care and Making the Most of Each Day." It will be delivered as a free webinar on May 16 at 3:30 PM EST.
Alzheimer's Disease and Related Dementias (ADRD) cause grief for families and increasingly complex cases for home care agencies. The Alzheimer's Association and the Commonwealth of Massachusetts have developed an innovative new program to train family and caregivers in the use of Habilitation Therapy to reduce the care challenges in these difficult cases. Participants will learn about best practices in the industry as the country faces this growing challenge.
"We are truly honored to have been selected to deliver this information, among the roughly 17,000 thousand homecare agencies nationwide," says Caring Companion owner and long-time Concord resident, Jim Reynolds. "We owe this to our Concord office director, Dr. Deborah Bier, who has become a recognized expert on dementia and home care."
Reynolds and Bier write a monthly column for the Concord Journal and other Gatehouse Media publications entitled "Living and Loving: Elder Care in the 21st Century." Reynolds has established the agency as a leader in developing innovative technology and care solutions applied to elder care. They have been praised for their unique proprietary family communications platform, as well as its focus on wellness, and use of Habilitation Therapy to care for clients with Alzheimer's Disease and related dementias.
Bier, a 30-year Concord resident, was in the first group in Massachusetts to be certified by the Alzheimer's Association and the Commonwealth to train dementia caregivers and coach dementia families in Habilitation Therapy. She has a 25-year career as a counselor and agency director helping multi-generational families apply wellness approaches to managing chronic illness.
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.
“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.
The best part of the day was simply being with so many other people who were happy to be helping others. There’s something about the spirit of working together to help that is enlivening for me. I am so naturally self-absorbed that I can easily focus on my own circumstances, but when I do something to help out, the spirit of gratitude and service that I see in other people infects me. So that made the entire event a joy – especially since so many friends had donated generously. THANK YOU to all of you!
In fact, it was so much fun that Debbie Bier (the Concord office director, Dr. Deborah Bier) and I will form a team for the Alzheimer’s Memory Walk in September. That’s not a physical challenge – about 3 miles. The point is to raise awareness and money to help fight a disease that’s hurting a lot of people. If you’re interested in joining the team, let us know. You will have a lot of fun with lots of great people.
We got off to a 6:30AM start. That was smart because we got in several hours of riding before the sun really got bad. As we pulled out of the parking lot, another rider recognized me from the Concord Journal article. I was glad to see that; much of the challenge we face now is awareness, and knowing that others saw the article helped to confirm the effort.
The first leg included lots of collegial chatting among cyclists – swapping notes about where we’re from, where we enjoy riding, other fund-raising rides. Really a nice leg of the trip. We circled down around the Wachusett Reservoir, and from that point I was on routes new to me. The scenery was gorgeous and I was struck again by New England’s beauty. As a native Floridian, I love the change of seasons and the variety of landscape here. But man – it was muggy! Even at 22 – 25 mph, the sweat didn’t seem to evaporate. But at least it was overcast to that point. I knew that wouldn’t last, so I counted my blessings and looked at the farms and rolling hills.
At the rest stops I wrote a Facebook post for any donors or others who’d expressed support. That was fun, but I tended to stiffen because of the long stops and the first 5 – 10 minutes after re-starting made me groan a bit.
Then the sun came out. About that time, I got lost. I had fun laughing at myself – who else would go on an Alzhiemer’s ride and get lost?! You guys will be riding for me before long (and joking aside, 10 million baby boomers will get Alzheimer’s – this is serious business). Local cyclists pointed me the right direction and I got back on track, 4 miles later. Oh well. You just pedal ’til you get there. But it was sure getting hot!
By the last legs the riding conditions were not pleasant anymore, but the people were still great and we’d been riding together now for 5 hours. You’d encounter the same folks at different points, depending on how long someone stopped or who went faster on a given leg (or who got lost). I made some friends and was enjoying the day. Whoever said, “It's not the heat – it’s the humidity” wasn't a cyclist. Some of us formed a pace line on the last two legs, which helped both physically and psychologically.
By the end I was a happy camper and looking forward to some ice cream. My wife Diana and my kids Julia and Liam were really kind and came out on a hot Saturday for the finish line. Debbie Bier also came with her husband Rich Stevenson. I really appreciated all that support, and after a lunch of Red Bones barbeque (a local favorite, for readers who may not be from around here) and a 5 minute massage, we headed off to Bedford Farms for ice cream.
All in all, a wonderful day. And again – THANK YOU to all who donated, and to those who help spread the word. The cure for this disease does not appear to be around the corner, so we have a lot of work to do -- and a lot of people to support while it is found. Working together, we can do it. And at the end of this day, having worked together with all who rode, or volunteered, or donated, or spread the word felt just great.
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?
Well, maybe: there are early-onset cases of dementia involving people in their 50s and 60s. But this is unusual. It's more likely what I call MLDS: Mid Life Distraction Syndrome. To state it idiomatically: we have too many balls in the air, are up to our eyeballs, and struggling to tread water while having too much on our plates. But still, we wonder: are we experiencing "normal" forgetfulness?
We may also wonder about our elder parents, spouse or other aging loved ones. Should we be concerned about certain behaviors we see? What does forgetfulness that is not "normal" look like?
I'm not going to answer by focusing on physiological processes or diagnostic criteria, but on simple, everyday functioning. I encourage you to consult your physician if this topic continues to worry you, or the following seems to point to something that is outside the norm. Try these six points on for size.
As we can see, forgetfulness that is not "normal" is a pattern of deteriorating functioning, not just incidents of forgetting that can be corrected. Where there is loss of abilities previously held, and/or negative changes in long-established, characteristic behavior and personality patterns, this is when we should be concerned.
We can more gracefully adjust to the challenges of "normal" distracted or age-related forgetfulness. We give ourselves and our loved ones more time to recall events, names, and words as we age, because "normal" recall can take longer. Recognizing that multi-tasking may become more difficult the older we grow, we take this into account when planning. Fatigue and stress are great thieves of memory. Many folks taking care of aging loved ones -- particularly if that person has dementia along with other chronic illnesses -- exhibit memory slips that correlate with their exhaustion level. Use this as an indicator that additional help is needed, such as respite care to relieve the caregiver.
We now know many ways to help a person with dementia function better through changes to their environment -- whether in the person's home or in a facility -- and with daily care that reflects best practices. This is often referred to as "habilitation", and we will talk about these methods in future columns.
Caring Companion Home Care has adopted and trains our caregivers in habilitation therapy when caring for clients with Alzheimers Disease and related dementias (ADRD). This approach was developed at the Massachusetts Chapter of the Alzheimer's Association, and is considered to be the best standard of care for all types of dementia. Sadly, it is not in as widespread use in all aspects of elder care as it should be.
Habilitation therapy is a comprehensive behavioral approach to caring for people with dementia. It focuses not on what the person has lost through their illness, but on their remaining abilities, aiming to create and maintain a positive emotional state through the course of each day. Their capabilities, independence and morale are thoughtfully engaged to produce greater psychological wellbeing. In this way, difficult symptoms can be reduced or eliminated, despite the disease’s progress.
We had been using this technique for several years, but when the Alzheimer's Association and the Massachusetts Executive Office of Elder Affairs offered a curriculum based on Habilitation Therapy, we jumped at the chance to become certified Habitliation Therapy coach. This method emphasizes validating the client’s emotions, maintaining dignity, creating moments for success, and utilizing all of the patient’s remaining skills. Habilitation therapy helps caregivers have positive and successful interactions with their loved ones by optimizing and maximizing the care recipient’s strongest skills. The goal is not to re-habilitate the client to an earlier state of functioning, but to “meet them where they are” with the remaining skills they possess.
Every interaction with the person with dementia, every task performed for or with the client, and every aspect of the environment around the client needs to be thoughtfully selected or adjusted with habilitation in mind. Habilitation therapy can be applied in the home or institutional setting, and can be learned by family, friends and professionals alike.
Habilitative therapy also benefits caregivers, be they family, friends, or professionals. The ability to enjoy time together and to share a relationship, activities, and feelings with a person with dementia can be uplifting for everyone involved. The satisfaction we at Caring Companion get from forming warm bonds with our dementia clients, and to help them have satisfying, peaceful days is what keeps us excited about this work.