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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.
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.
Yesterday I attended a presentation by Dr Gregory Martin, Chief Medical Officer of Emerson Hospital in Concord MA. Dr Martin highlighted, with justifiable pride, a recent program by Emerson to reduce their already-low rate of hospital infection. Anyone familiar with current elder care issues at hospitals knows the concern that the facilities can be a petri dish of infection, and with frail elders and compromised immune systems, the risk of becoming sicker in a place designed for healing is one of the frustrating ironies in today's health care world.
As a home care agency owner, I was particularly interested in his remarks about reducing infection for clients with catheters, since so many of our clients have them.
The primary method for their dramatic reduction was simple: avoid as many catheter days as possible. Catheters are sometimes medically necessary but can remain inserted longer than necessary because of the convenience they offer nurses, patients, and caregivers. But that convenience comes with a risk: the catheter offers a pathway into the body and the bloodstream, and every day it is in use increases the opportunity for infectious bacteria.
I had hoped that Dr Martin would identify procedural steps which, combined with standard precautions around infection control, home care workers could follow to support the reduction in infection rates. But as it turns out, the largest role our staff will play is helping with care for clients who cannot manage toileting tasks independently and who, because of the reduction in catheter days, have more days when they will need help.
Families with elders who use catheters, especially following a hospitalization, might do well to check with the physician to determine the earliest point when the catheter can be safely removed. It does increase the care burden for families or professional caregivers, but if the trade-off is reduced chance of a hospital readmission, the additional work is more than worth it from every viewpoint: financial, patient health, quality of life, and simple disruptions in the lives of all who family who care for a hospitalized elder.
Earlier this week I attended a meeting of the New England Health Information Management Systems Socitey (NEHIMSS) about use of mobile technology in health care, including home care. The session, delivered by Dr Fernando Martinez, focused on hospital systems and issues of security and cost as well as quality of care. But I was again struck by the importance of the data collected by home care workers and the potential to improve health outcomes, reduce cost, raise patient quality of life, and lower the stress of family caregivers if the data is documented and followed by either an educated lay person (family member or non-medical case worker), so that earlier intervention can eliminate hospital stays.
Hospitals are heavily focused today their 30-day readmission rates. If patients have to return to the hospital within 30 days of discharge, hospitals lose a lot of money, due to regulations that have recently gone into effect via the Afforable Care Act (ACA, or Obamacare). But sending nurses to patients for follow up is expensive, and often the relevant data can be collected (not diagnosed, but collected and reported) by family members or home care workers, especially CNAs. This doesn't even need to be biometric data (blood pressure, insulin levels, etc.).
Readers of this blog know that we have for years been using the Connected Home Care family web portal, which we developed precisely so that we can improve care by getting more data to family and agency decision-makers faster. Caregivers post reports after every visit, and can easily document many factors that indicate a need for early intervention that can avoid a hospitalization. Here is a list of factors we watch so that we can escalate quickly rather than allow health to deteriorate:
Without remote, mobile access, these conditions typically go unreported to a decision-maker for a week or more. But posting this in a secure report allows family and case managers to monitor conditions far more closely. Accountable Care Organizations (ACOs) and hospitals should press their software system suppliers to include features like this that allow the patient, family, and other authorized users to post data on patient status for review and, when indicated, action by the health care provider. The benefits are clear, the cost is low, and the technology is available -- indeed, we have been using it in the field since 2009.
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..
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.
Yes, you can rebuild a shrinking brain. And you can do it without drug intervention, seeing physical progress in just two months! This report on a peer-reviewed, published study shows us it's entirely possible to impact areas of the brain involved in memory and learning just through the power of the mind itself: Mindfulness Meditation Training Changes Brain Structure in Eight Weeks (thanks Pam Ressler, RN of Stress Resources for pointing us to this article).
Positive aging could bring us some lovely changes. Swedish sociologist Dr. Lars Tornstam's evidence-based Theory of Gerotranscendence says that old age holds "a shift in meta perspective, from a materialistic and rational view of the world to a more cosmic and transcendent one, normally accompanied by an increase in life satisfaction." Why would we want to be perpetually worried about aging (which sure beats the options, as they say), when we could instead experience increased life satisfaction by embracing our old age? Is this why so many of us like to hang out with elders, because we think they have life's priorities straight? (I know that's why I do...)
This is what a magnificent 85 year old brain can do! You don't have to agree or disagree with the author's politics to admire the beauty of her mental functioning. This woman's writing is just wonderful! With its tightly crafted text, she is obviously well and recently informed -- not to mention funny, bold, and probably gerotranscendent. Full of life, too!
Hopelessly unmanageable dementia patients can be totally turned around. Again, without drug intervention. Giving Alzheimer's Patients Their Way, Even Chocolate in the New York Times shows magnificent work being done through the right care environment and care interventions. This article just makes my heart sing -- rather than break, as it does when I see the dreadful, rapid decline dementia patients can experience in inappropriate settings with caregivers who are inadequately trained. (Don't miss the slide show with this article.)
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!
I can't say enough about how such peer-to-peer sessions are an important addition to any professional's work. While that was my first meeting with this local partnership (partnerships are local working groups with the Alzheimers Association -- here is the list of partnerships in MA), it certainly will not be my last -- the Metrowest Area Partnership is beautifully organized and has really high-quality offerings at their meetings.
For those for whom Dr. Raia's name is not familiar, he deserves some introduction. Following that, I will list about four things I thought were vital take-aways from the session.
Paul Raia, PhD (photo at right) is an innovator along many dimensions in the field of dementia. He's been directing patient care and family support at the Alzheimer’s Association over 20 years, and now serves as vice president of clinical programs at the MA/NH Chapter. He developed the "Habilitation Therapy" approach to dementia which focuses on the patient’s emotions and their remaining capacities -- which is an approach we very much support and use at Caring Companion. He started the first support group in the US for early-stage patients, and the first support group for young children with parents or grandparents who have Alzheimer's. Many of his projects have become best-practice models and have been replicated nationally. Spending a morning with him, I saw how his enormous clinical experience and expertise clearly shone through, as did his great warmth, compassion and understanding. This is a very special man, and if you have the chance to hear him speak, I recommend you snap it up immediately.
Here are the four important take-aways I want to talk about here; these I'll post more about each of these in coming days:
By Guest Blogger, Paula von Kleydorff, Program Director, Carleton-Willard At Home
(Editor's Note: Caring Companion is proud to be a Carlton-Willard At Home recommended provider; CWatHome members enjoy special pricing or other considerations from recommended providers)
Carleton-Willard At Home is in the forefront of what is being called a “Village Movement.” In 2001, Beacon Hill Village was the first in the country to begin providing comprehensive services to local residents who preferred to remain in their homes as they aged. Across the United States there are now 54 organizations similar to At Home and another 100 in development. Some are in the middle of urban areas, others are suburban and one in California covers hundreds of miles. But all have a common goal – giving local residents the peace of mind and support needed to age in place.
This past November, representatives from many of these groups came together in Philadelphia under the auspices of the Village to Village Network, a national organization launched last year. Throughout the two day conference, new and developing groups listened to and shared their stories, compared program offerings and brainstormed about ways to operate more effectively and efficiently.
There were a number of common themes: a willingness to do whatever it takes to meet a members’ need; the importance of top quality service providers; the need for good transportation options and pride in being at the forefront of a new type of community.
But there were also some very striking differences. Some differences are based on geography -- urban, suburban and rural organizations have had to adapt services and structure to their very different locales. Other differences are demographic -- some groups target low income and inner city seniors without any other resources to fall back on.
One of the most discussed conference topics was how to reach the myriad of people who support the concept of staying in place in retirement, and will certainly join an organization like At Home at some point but who consider themselves “not ready yet”. All too often, people decide to become members only when a crisis strikes. We welcome those members and marshal our resources to help them through their crisis. Yet experience shows that it is much better to operate from a position of strength, making decisions and setting up support before there is a compelling need. Having the foresight to join At Home before you need help can provide a sense of security and wellbeing, the peace of mind that makes aging in place a comfortable reality.
As we all struggle with the inevitable cold and snow, this winter might be the perfect time to let At Home support your independence and give you peace of mind.
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.
Offering GCM services in addition to legal transactions like wills and trusts provides an opportunity for the client family to develop a closer long-term relationship with the firm that also handles their legal services. It allows them to be more of a one-stop shop for planning needs. Because of this, Summers and Summers offers a service they call the Provisio Life Plan, which provides a road map to current health and lifestyle planning needs.
Another way they show their forward thinking is through an online document vault service that they offer families and other law firms in the industry. This allows families to securely store important documents online so that they can be retrieved remotely if needed, and are always accessible. Anyone who has had to search endlessly for a parent's car registration or other important document will immediately see the value of technology that provides an always-available, remotely-accessible, secure and organized safe deposit box for documents.
With this industry changing as fast as it is, and the needs of the aging population growing so fast, it is a pleasure to run across forward-thinking agencies and individuals working hard to serve their clients and seeking new, better ways of solving problems. Summers and Summers is that kind of firm and we are proud to be their colleagues.
Recently, I was honored to be part of a four-person panel at the Wayland Public Library speaking on the topic "What's New in Aging?" We discussed navigating the new terrain of aging in the 21st century, followed by a question and answer session from the audience. Juergen H. Bludau, MD (photo at right), Harvard University and Brigham and Women's Hospital geriatrician, and Carol Sneider Glick, Esq, elder law specialist with Squillace & Associates of Boston, were wonderful fellow panelists. (Part 2 of this talk is scheduled for April 6, 7pm at the same location - register here)
I want to note here high points of the evening, including the excellent questions the audience brought. I felt very much at home in the company of these speakers, all on the front lines of bringing best-quality care in a quickly changing landscape. My fellow panelists as well as the audience of about 45 from Wayland, Weston and beyond were enthusiastic and engaged with every presenter's points.
Dr. Juergen H. Bludau, MD (photo, above right), a Harvard University and Brigham and Women’s Hospital geriatrician, built a powerful case for why geriatricians are so vital for elders. Despite the enormous demographic change of aged and aging people in our society, the need for geriatricians is not universally accepted. "Older people are biologically different from people of other ages," said Bludau, "this must be understood to treat them correctly." During their standard training, physicians receive very little information about treating elders. Because symptoms of serious conditions like pneumonia or a heart attack often present very differently in elders, it takes a specially trained eye to not brush off what may otherwise appear to be insignificant conditions. Though children now are widely understood to benefit from specially trained pediatric practitioners, there is still a long way to go for such general acceptance to extend to physicians specially trained to treat elders.
Bludau pointed out that even among aged individuals who are enjoying good health and vitality, they may be living very close to the edge of their their ability to rebound from an illness or injury. "Homeostenosis, the point at which a person has used up all their inner reserves and resilience, may be close to the daily functional level of many elders," he said. This is why once an elderly person who was healthy becomes ill or has an injury, one problem after another may develop, and they may not be able to regain their health. Seemingly small health events may appear to have disproportionately negative effects on elders if they are viewed through a non-geriatrician's lens.
Attorney and Wayland resident Carol SneiderGlick (photo, right), elder law specialist with Squillace & Associates, P.C., in Boston, made it clear that being an elder lawyer isn't just about preparing documents like a will and power of attorney. While these are important to have, the attorney has to get to know much more about the elder's life and goals, as well as their financial situation, and should be a specialist in elder law, including Medicaid and tax planning, in order to be able to prepare the correct documents so that the client can be adequately protected and that the documents serve them as intended. "Many aspects of elder law are complex, such as tax planning," said SneiderGlick, who holds an advanced law degree in this area. "It's heartbreaking to see a client who thought they were all set with their asset protection and tax planning, to find that they haven't even come close to meeting their goals."
I spoke about how dramatically aging has changed in the last 40 years, with people living substantially longer with many more complicated medical conditions, with family often no longer nearby, or nearby but so busy with work and raising children that they can't consistently help. But also in the past 40 years, many of the ingredients for successful aging have become available, but that they are not being put together and used nearly as frequently as they should be. The audience and my fellow speakers warmly received the messages I offered about bringing home care into the 21st century: the importance of choosing caregivers who perform up to modern care standards, reducing at-home care costs by bringing in monitoring technology, how teamwork is vital, and the way we are keeping the family and care partners informed about care in the home through our one-of-a-kind online system.
The audience was very attentive, and had a wide range of questions the panelists answered. In the final analysis we can see that regardless if they were asking about lawyers, medicine, physical therapy or other disciplines, many questions were touching the same point: "How can family and professionals know that others on the care team know what they are doing, are making the right decisions, and carrying out the right care?"
In general, the panel said it was important to make sure there is proper credentialing of professionals, that when possible you choose care team members from institutions or private practices that specialize in your area of need, and that if necessary you get a second opinion from some other institution or practitioner.
After continuing to think about this question, I would add that this underscores the need for a fully integrated team approach with great communication: it's likely that team members have worked with similar circumstances to your or your loved one's, and have also worked with other professionals in many different disciplines. Periodically check in with those seasoned practitioners to get their take on how the team is performing. If they are all from the same practice or institution, my experience is that it's likely you may not get straight answers as politics may overwhelm an urge to speak frankly. However, if you watch their body language, listen to their voices, to what they say and especially to what they won't respond to, you will get clues to what they really think. More direct questioning may or may not bring out their true opinions. Do your best to be uncritical, non-blaming and calm, and try to elicit their best recommendations for improvements without pointing fingers at any particular team member.
SneiderGlick concurred. "A good, caring professional is going to notice if something isn't going right, even if it's in an area that isn't their specific expertise," she said. "I was just referred a client by a financial planner who had an instinct that her client's trusts weren't set up correctly, although she didn't know enough about it to know exactly what was wrong." Upon review, Sneider-Glick found several deficiencies in that client’s estate planning client’s estate planning documents that if left uncorrected, would have defeated that client’s goals. Fortunately in this instance she was able to correct them before it was too late. "Talking fully with the client and talking among professionals is vital -- there is no substitute for working together as a team," she concluded.
The second part of this series is scheduled for April 6 at 7pm at the Wayland Public Library, and focuses further on 21st century care essentials, helpful to both elders and adult children looking for help with aging parents. Both presentations are a free service to the community, and are sponsored Caring Companion Connections of Concord. To reserve a seat, sign up at http://info.caringcompanion.net/21st-century-caregiving/.
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.
By identifying additional resources that patients need, such as recommending environmental accommodations, training caregivers and family members, specialized dementia care can be provided within the community setting.
Claire Henry, Masters level clinician and Certified Dementia Practitioner, is principal at Caring Resources. Ms. Henry is well known in the elder care community for advocacy on behalf of clients with dementia and for providing specialized services to dementia clients and their families. Additionally, she has worked with organizations and facilities that serve this population by designing programs and developing specialized training programs.
Caring Resources embraces the philosophy that a consistent and safe environment with regular medical care and appropriate environmental cues can reduce dementia symptoms. This allows the dementia client to maintain meaningful interpersonal relationships within the most appropriate home environment. Caring Resources’ core values include providing the highest level of care for loved ones with dementia, ensuring families and caregivers learn cutting-edge practices in training and support. Caring Resources follows a holistic care model focusing on client-centered care and behavior management strategies, creating safe home environments and strengthening family relationships. For more information, call 781-540-9357 or see here for more information.
Many elders refuse to take any (or enough) prescribed pain medication -- particularly opiates -- not wanting to be impaired or sleepy. And there's good reason to worry about this; while we do want people to follow doctors' orders around prescriptions, and to have excellent pain management, opiate use can increase the risk of falls and other accidents. And many physicians have become very sparing with pain medication, fearing addiction or misuse, so many patients end up going without adequate pain control.
But drugs are not the only way to manage pain effectively. This report by NPR (Even Beginners Can Curb Pain with Meditation) of a study conducted by Wake Forest Baptist Medical Center gives scientific affirmation to what meditators have known for millenia: that meditation provides pain control.
After 80 minutes of meditation training, "... the subjects reported a 40 percent decrease in pain intensity and a 57 percent reduction in pain unpleasantness. And it wasn't just their perception of pain that changed. Brain activity changed too."
What a compassionate, risk-free tool to have in the toolbox. We can only hope that some day, a complaint of pain will be met with a prescription to "take 2 meditations, and call me in the morning"!
5PM Reception -- 5:30PM Presentation • RSVP at 617 566-1700
Chestnut Park at Cleveland Circle • 50 Sutherland Road • Brighton, MA 02135
Sleep disturbances… resistance to care… suspiciousness… sundowning… hoarding… rummaging… These challenging behaviors can be frustrating, frightening, and exhausting for families and caregivers of dementia patients.
But there are effective, gentle methods for dealing with such behaviors. Through presentations, case studies and discussion, this event will help you develop some of the skills needed to achieve better outcomes with dementia patients.
Claire Henry, M.Ed., CDP, is well known in the elder care community for advocacy on behalf of clients with dementia, and for providing specialized services to dementia clients and their families. Additionally, she has worked with organizations and facilities that serve this population by designing programs and developing specialized training courses. Ms. Henry is a master’s level clinician and a Certified Dementia Practitioner working with elders for over twenty years. She is the principle of Caring Resources, specializing in dementia care solutions. (CaringResourcesInfo.wordpress.com)
Deborah Bier, PhD, has helped individuals with significant physical or psychological disabilities and their families for over 20 years. She understands the impact that one person’s chronic or degenerative disease creates for the entire family, and utilizes a wide range of innovative approaches to help reduce their stress, and reconnect them living again. Dr. Bier has a doctorate in therapeutic counseling. She is a director of Caring Companion Connections, a groundbreaking home care agency (www.CaringCompanion.Net).
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.
But there are effective, gentle methods for dealing with such behaviors. Through presentations, case studies and discussion, this event will help you develop some of the skills needed to achieve better outcomes with dementia patients. Learn:
This event offers CEU's for Social Workers and is free of charge.
Meet the Presenters
Claire Henry, M.Ed., CDP, is well known in the elder care community for advocacy on behalf of clients with dementia, and for providing specialized services to dementia clients and their families. Additionally, she has worked with organizations and facilities that serve this population by designing programs and developing specialized training courses. Ms. Henry is a master’s level clinician and a Certified Dementia Practitioner working with elders for over twenty years. She is the principle of Caring Resources of Norwood, MA, specializing in dementia care solutions. (CaringResourcesInfo.wordpress.com)
Deborah Bier, PhD, has helped individuals with significant physical or psychological disabilities and their families for over 20 years. She understands the impact that one person’s chronic or degenerative disease creates for the entire family, and utilizes a wide range of innovative approaches to help reduce their stress, and reconnect them living again. Dr. Bier has a doctorate in therapeutic counseling. She is a director of Caring Companion Home Care, headquartered in Concord, MA, a innovative home care agency.
Improving home care for elderly Massachusetts senior citizens has become passion of mine, and recently I was asked to address the New England Home Care Conference in Newton, MA, on how to use web technology to improve the quality of senior care, or eldercare. So I ask the room a seemingly-obvious question: “How many of you registered for this online?” Dozens of hands went up among attendees of the largest home care conference in New England, which was the first partnership of the state home care associations in the region. I continued with more obvious questions: How many made your travel reservations online? Dozens. How many shop, pay bills, check kids’ school schedules? Dozens, dozens, dozens -- in each case, nearly everyone.
Then came the punch line.
“All of you use the internet to make your daily lives easier. How many of you provide that same convenience to your client families?” Not a hand was raised. This is where I always get animated. We are facing a national demographic crisis, and we all know that major changes are coming in Medicare and care for elderly seniors at home. But home care lags behind most other industries in use of the internet to improve service quality. We can improve the quality of care and reduce its cost if we get better information to clients faster. We need online daily reports, photos, schedule updates, and related features for remote family members. We need what we call ‘home care for the 21st Century.’
To be clear, I am not a software salesman. I own a home care agency, and I developed an online system for our own use, which led to my invitation to address the industry conference. The fact that I’m not selling anything lends credibility. Agencies know that I deal with the same issues they do, and I have no benefit if they believe me or not. But there’s no excuse for our industry to lag. Yes we have HIPAA regulations, but banks have pretty strict security and privacy regulations, and they deliver vast service improvements via the web.
Improved elderly home health care is far more important that simple convenience. At present, unless you are standing at the kitchen table to read the log book home health aides keep at the house, you don’t know what’s going on. Whether you’re across town or across the country, you just can’t always be there. But if we put the same report in a secure, online family portal, you can read and respond from anywhere. It’s not always dramatic events like a fall that require response – daily changes in status can be early indicators that intervention would help. Moderate changes in appetite or in sleep patterns may indicate an illness that can be addressed and cured more easily, at lower cost, if addressed earlier. In fact, we recently met again with Liddy Manson, CEO of BeClose, which helps detect just such changes without a person having to be on site - again, offering a chance to improve client health and quality of care while simultaneously reducing its cost. I’ll blog about our conversation with Liddy next week.
Care improves and cost declines by getting information where it needs to be, faster. Better information improves quality and price any process in any industry. It certainly improves home care for the elderly.
And it’s not just the remote caregivers – typically, adult children of the client – who benefit. One of the surprising outcomes we discovered from using our system was that the on-site caregivers improved their care. To be honest, I can claim no strategic vision for this. It just happened. But caregiving is a lonely job, and most caregivers don’t get a lot of feedback. Suddenly with online reports, people are reading what you’re doing each day. It’s not uncommon for them to call and ask a question or follow up. They’re interested! They always were, but now they are also informed about what’s going on. So it’s not a matter of having someone look over your shoulder; it’s just easier to stay engaged in your job if feel as though you’re part of a team.
And the convenience shouldn’t be minimized. If you’re the main caregiver for your parents, you may be keeping 4-8 siblings and other family up to date. Just that can be exhausting. But if our industry would adapt web technologies, they can all check the updates themselves and you could be freed from a lot of stress. And being able to check the schedule, or request a change, check your bill – without getting on the phone just reduces stress in the lives of people who face a lot of it.
And the response? It was pretty good. Two years ago, other agencies looked at me as if I had two heads when I said this stuff. Now at least they are curious and interested. But we’re still inexcusably far behind the rest of the industries in this country. We’ll get there – we have to!
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.
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.
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:
1. Be Here Now! Don't spend time time with your loved one worrying about who that person was -- be here now! Be with your loved as he or she is today. Grieving the loss of capabilities or thought only causes us to lose the gift of today. Today you see a different person to love, but today is a gift nonetheless. Many joys and much love is available, many laughs and some welcome tears will come, new memories and precious moments can be found even if your mother, at this moment, cannot call you by your name. Grief is a natural part of your process, yes - but in each day you can bemoan the worst or give thanks for the best. So make the best and you will be amazed at the rewards still available.
2. Get into their world. Forget what you think is "reality." The communication is what matters. If Dad thinks he's going to play golf in the middle of winter with three friends who have been dead for 20 years, so what? Ask him how long he's been playing with them and help him get ready. Have him start telling stories about those friends and laugh along with him at the jokes. At a logical point, suggest that he get a snack since he'll be gone so long and redirect him to another activity.
3. Set up a routine. On the practical side of things, realize you can help enormously by helping to set up the Alzheimer's person's routine every day so they thrive. Environment affects behavior. Proper lighting mimics sunlight. Mimicking sunlight with daylight bulbs helps. For people who are easily confused, removing clutter is especially important.
4. COPE. Joanne coined an acronym COPE - Communicate, Organize, Prioritize, Energize. Communicate with people with Alzheimer's. Speak to them, not about them as if they were not there. Ask them to tell you stories - although short-term memory is sharply reduced, long-term memories remain. The stories bring with them mature adult emotions, which remains even in the face of cognitive decline. Organize - reduce the number of choices, and provide sharp visual cues to help people find the right room or the right clothes. Prioritize - do not try maintain the level of productivity you have when you are not caring for an Alzheimer's person. Choose what's important and doable in this day, and leave the rest for another time. Energize - be sure your loved one gets off the couch and turns off the TV. Go for walks. Garden or shop or sing songs. But help your loved on remain engaged, or re-engage, in life's passions to whatever extent is possible today.
OK I said I was going to choose three, but I included four. That's what it's like with Joanne - there's just too much good stuff to pass up. I'll probably include more later. But in the meantime, if someone you know has Alzheimer's, get her book - it will be a resource you will value for a long time.
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.
The Executive Office of Elder Affairs (EOEA) of the Commonwealth and the Massachusetts Alzheimer’s Association are doing something about this widespread gap in proper dementia training. Via a federal grant, they are providing an ADRD curriculum for caregivers, of which Dr. Bier was among the first in the Commonwealth to be certified to deliver. This training also makes her eligible to provide state-funded or private Alzheimer’s coaching services to families, and to train home care aides in the specialized skills needed to work with dementia clients served by the state.
Deborah holds a doctoral degree in therapeutic counseling, and has additional specialized training in family and geriatric issues. She has spent over 20 years in private practice working with individuals of all ages with significant or chronic physical and/or psychological illness and their families. Her two years with Caring Companion and this certification, as well as additional dementia training with StilMee, have furthered her experience and skill working with ADRD.
DEMENTIA TRAINED CAREGIVERS. While Caring Companion has already been providing a significant level of Alzheimer's-specific training and ongoing coaching to their caregivers, they will be able to expand their in-house training offerings. "Now having an approved standard of competency means that our training can rise to this expected level of excellence," said Jim Reynolds, CEO of Caring Companion Home Care. "We already offer some of the best-trained dementia homecare workers in the Commonwealth, and now they will be even better prepared."
DEMENTIA COUNSELING FOR FAMILIES. A new or suspected diagnosis of ADRD is a big upset for a family, and the learning curve can be steep when it comes to figuring out next steps. Is my loved one safe? Why do they act like they do? What can we expect of the disease as it progresses? How can we deal with their puzzling, difficult behaviors? Dr. Bier can help families answer these questions and more with new one-on-one family counseling sessions. Look for more information about this to come soon on this blog.
Graphic, bottom, right: Alzheimer's Association.
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.
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). Dr. Raia has worked in the fields of gerontology and psychology for 30 years and appears regularly on Boston-based media outlets and on CBS, NBC, ABC, CNN and PBS national news programs. He serves as Vice President of Clinical Services for the Alzheimer’s Association, Massachusetts/New Hampshire Chapter. He has a special interest in the management of problem behaviors and is a founder of an approach to dementia care called “Habilitation Therapy,” a technique that focuses on the patient’s emotions and remaining abilities. Dr. Raia will discuss habilitation therapy, among other topics, at the event. Senior support experts will also be on hand to discuss local resources for families.
By Susanne Liebich (photo at right)
Editor's Note: This program is an excellent example of what we believe here at CCHC: that our clients are first and foremost people with challenges, not full-time patients. The difference living this point of view is profound, as this article makes abundantly clear.
The healing power of dance… I stand here to vouch for its validity. And in particular, I want to tell you about a technique called Dance for Parkinson’s Disease developed by Mark Morris Dance Group in 2001. This technique is not about therapy, yet it is therapeutic. It is not about exercise, yet for most, it is a wonderful workout using the whole body in different ways. Dance for Parkinson’s Disease is a pedagogy that integrates ballet with imagery, balance, mobility exercises, expression and enjoyment of the art dance. It’s about creating something aesthetically beautiful and creative with the body. It’s about appreciating dance for dance’s sake in a group setting and to explore the range of physical and creative possibilities that are still very much open to individuals with Parkinson’s.
The fundamentals of dance training – things like balance, movement sequencing, rhythm, spatial and aesthetic awareness and dynamic coordination – seem to address many of the things people with Parkinson’s want to work on to maintain a sense of confidence and grace in their movement. Students learn repertory and technique, and get to develop a sense of mastery over the movement and their bodies. But we’re primarily interested in is a change of attitude that comes when people with Parkinson’s engage in an artistic learning environment like a dance class. Suddenly, they are surrounded by a world of possibility, not limitation, and it’s liberating and inspiring for them and for us.
Dance for PD started in 2001 when Olie Westheimer, the Executive Director of the Brooklyn Parkinson Group, approached the Mark Morris Dance Group with the idea for a real dance class for members of her group. Olie felt people with Parkinson’s spent lots of time thinking and talking about Parkinson’s, shuttling between doctors’ and therapists’ offices. She wanted people to do something positive together and she had a hunch that a group dance class, taught by professional dancers, was the thing.
They started with one class per month, and ten years later, they have a weekly class, free of charge through grants received, for anywhere between 40-55 people with Parkinson’s, their families, friends and caregivers at the Mark Morris Dance Group in Brooklyn. The program has reached 45 communities around the world. And the intriguing thing is that on one hand, it has nothing to do with Parkinson’s. In class we don’t talk about symptoms, but because of the way the dance class is structured, it’s all about Parkinson’s. Dance fits Parkinson’s like a glove, but in class, people tell us they only notice the glove, not the Parkinson’s.
• Improvement in gait
• Reduction in tremor
• Improved stability and short term mobility
• Increased facial expression
• A sense of social inclusion
In class, people become more accomplished dancers, they are able to sequence movement more easily, and move with increased grace, confidence and musicality. One of my students, a retired architect in his mid 60’s, said he felt better after the first class. He said his balance improved and he surmised the rhythm of the dance moves combined with the music was helpful.
Dance is a relative newcomer to the field of Parkinson’s because most of the focus has been on exercise and fitness-based programs, but dance’s unique ability to bridge the physical, mental and emotional realms – all in the spirit of playfulness, fun and musicality – means that more and more people are accepting it as an essential part of the PD wellness portfolio. When Dance for PD started, there were some strangle, skeptical looks from the medical community. That initial skepticism is giving way to sustained interest and perhaps, someday, dance will be seen as a "best practice" for people with Parkinson’s.
So who participates in the Emerson Hospital-based Dance for PD class on Thursdays at 10:30? I have six students and four caregivers, ranging in age from 80’s to 40’s. Four people come with caregivers, and two men comes by themselves. Ethyl, a lovely woman in her 80’s, is a watercolor artist and an art teacher. She had to stop teaching last year due to Parkinson’s. Ethyl’s symptoms have progressed to the point where she needs a walker, and sometimes a wheelchair. Ethyl arrives with a huge smile and joy filled eyes. I was prepared to make an accommodation for her during our standing/holding back of chair sequence, but she refused the modification and opted to stand with the others.
Ned, the retired architect I mentioned before, who is in his 60’s, arrives with his wife, Sally, a retire biology professor from Wellesley. They are both still very active and like to travel and bike ride. Ned has had Parkinson’s for 15 years, and although he has slowed down, he is still quite mobile. Grace, a woman in her 50’s comes with her husband Mike. Grace’s symptoms are severe, and she must use a walker. She has noticeable tremors, lack of coordination in her limbs, and the Parkinson’s mask with little facial expression. Yeet when the music and choreography start, she follows seamlessly. She appears to be in a zone. I can tell from her hand movements she has a dance background.
Jim, who appears to be in his late 40’s, comes by himself. He is a systems analyst who works at a local company, but makes time to work the class into his schedule. His wife is at home with their 7 year old twins. John can walk, but with trepidation and methodically. Yet he appears content and relaxed in the group and willing to participate. Edgar, a new student, of Hungarian decent, who came to his first class last week, asks “what are we supposed to do” and I can tell he is skeptical and anxious. In the beginning, he asks people about their symptoms. By the end of class, after our circle, he declares “my first class was a success!”
What do these students whose ages span 40 years share? The bond of Parkinson’s, the understanding of the difficulty of each other’s predicaments, support for each other, and in this class: joy. Joy at being able to depart from the limitations Parkinson’s imposes and create beauty by embracing freedom, openness and limitless possibility.
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.
New technologies to help seniors, the disabled and their caregivers are being launched every day. It's a huge, growing industry worth billions of dollars annually. But there are so many new products and services coming to market that most people feel confused and overwhelmed. Do these devices mean real aid for aging in place, or just a new way to part elders with their money?
Learn how to sort out the "toys and gadgets" from the helpful technologies on the market today. "Aging, Disability & New Technologies: Real Hype or Real Help?" Instructors Jim Reynolds and Deborah Bier, PhD will help participants make more wise choices in this bewildering, rapidly expanding marketplace.
The session will review some of the high tech tools available today, highlighting ones with the ability to help keep elders, the disabled and their families stay connected, happy, safe and healthy. The focus will be on consumer technology for fall prevention and alert, technologies to help care for those with Alzheimer's disease and other dementias, and to help with timely and accurate medication use.
Reynolds has been a National Practice Leader for IBM in the area of mobile and wireless technology, and is the owner of Caring Companion Home Care in Concord. Bier has been a health care educator, author, and wellness coach for over 20 years, and is the director of the Concord, MA office of Caring Companion Home Care.
This lecture will be held on April 13 from 2-4pm, through the MILES program at Middlesex Community College on their Bedford Campus. MILES (Middlesex Institute for Lifelong Education for Seniors) offers intellectual stimulation, interaction, and friendship for adults ages 50+. Some of the topics explored through MILES include history, politics, arts, fitness, health, safety, music, computers, internet, travel, business, psychology, law, poetry and opera. Courses have no term papers, exams or grades, and are held at their Bedford campus. They are facilitated by individuals with expertise in topics based on professional, educational or personal experience. Semester membership fee of $95 includes access to all MILES courses. MILES is an affiliate of the Elderhostel Institute Network.
Last weekend I attended the Aging in America 2012 conference in Washington, DC, and I had a chance to speak to a several large home care franchisors and a few networks of assisted living facilities who are considering adopting our software. While I was in Washington, I also arranged with the National Private Duty Association (NPDA) to give a webinar on family web portals and what features they can or should provide. And in an unexpected and pleasant surprise, NPDA also invited me and Debbie Bier to give a webinar on Alzheimer's training for consumers. All of that activity made for an exciting week and weekend!
As one would expect for a Washington DC conference,
much of the emphasis was on public policy, but it is clear that the Federal budget cannot absorb all the costs of providing the care our elders need. We -- those of us now between 40 and 70 -- will have to change the way we think and behave as we care for our elders and plan for our own care as we move into older age.
This can be more an opportunity for growth than a sign of decline. The demographics and finances simply will not allow us to slough off the challenge of caring for an aging population onto the Federal government, and go about our lives unconscious of those problems. Much of this challenge will need to be met at the community level, but that is a proper level of focus for this issue. Perhaps in the coming decade we will become increasingly aware that "It takes a village to care for our elders."
This can be considered by each of us in three spheres of activity: personal, communal, and societal. Societal is attractive, because we support a government or charitable organization to handle the problem for us. Self-interest usually insures that the personal sphere gets the attention it needs -- although sometimes only after having been ignored too long (buy long term care insurance if you have not already!). But the communal sphere is where the challenge will have to be met in the coming decades, and it is where we face arguably the biggest gap.
We have enormous resources at the community level and they do not have to require significant government outlays. Volunteers, good neighbors, faith and civic organizations can all play a role. To the extent that government is involved, perhaps funding of programs like "Meals on Wheels," which relies on networks of volunteers delivering meals subsidized by local and state governments, will stretch government dollars to maximum effectiveness.
Most of us can think and engage at a community level more effectively than we can solve societal or macro-economic problems. Some communities, especially poorer areas, will need more support than others -- and this can also be aided by civic-minded, nearby communities with more resources. Such an approach will not produce a uniform set of services across the nation. It will, however, allow each community to develop an approach right for its population, and will encourage all of us to step up to the challenge at hand.