Person-Centered Dementia Care: An Escalating Societal Challenge

A person with dementia is still a person. The loss of memory is not equivalent to the loss of self. It affects not just persons living with it, but their families, friends, and social networks.

The United States is facing unprecedented growth in the number of people living with dementia, with an estimated 5.3 million Americans—one in nine individuals age sixty-five and older—currently living with the disease. Classified as a neurocognitive disorder, dementia includes conditions such as Vascular dementia, Dementia with Lewy Bodies (DLB), and Frontotemporal lobar degeneration (FTLD), each of which present with their own specific symptoms and brain abnormalities. Alzheimer’s disease, the most common cause of dementia, accounts for 60-80 percent of cases. Dementia is characterized by a decline in memory, language, problem solving, and other cognitive skills that affect a person’s ability to perform everyday activities (Alzheimer’s Assoc. 2015).

Dementia is one of society’s costliest chronic diseases. According to the Alzheimer’s Association (2014), total per-person payments from all sources for health care and long-term care for Medicare beneficiaries with Alzheimer’s and other dementias, were three times as great as payments for other Medicare beneficiaries in the same age group.

“According to the Alzheimer’s Association, total payments in 2015 (in 2015 dollars) for all individuals with Alzheimer’s disease and other dementias are estimated at $226 billion. Medicare and Medicaid are expected to cover $153 billion, or 68 percent of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.”

Most importantly, dementia affects not just the persons living with it, but their families, friends, and social/communal networks as well. The need to recognize this expansive impact has been highlighted worldwide. (Wortmann, 2013, Batsch and Mittelman 2012, Prince, Guerchet, and Prina 2013). People living with dementia, those who love them, and those who assist them face many challenges. In addition to managing cognitive and physical changes to their health, they deal with social isolation and stigmatization because negative perceptions often fuel misunderstanding, distrust, and add to the burden of living with the condition.

The Origin and Adoption of Patient-Centered and Person-Centered Care

In 2001, the Institute of Medicine’s report, “Crossing the Quality Chasm: A New Health System for the 21st Century,” described our nation’s health care as fragmented and impersonal, and called for a redesign of the system, including a shift to patient-centered care practices. The report defined patient-centered care as being “respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” (IOM 2001.)

Patient-centered practices are rooted in the humanistic work of Carl Rogers, Ph.D., a founder of the client-centered approach to psychology, and Abraham Maslow, Ph.D., best known for his theory of self-actualization, among others. Humanism affirms that people are unique and multidimensional. Their psychosocial and spiritual dimensions are as important as their physical health for their well-being (Rogers 1961).

By 2011, the terms patient-centered care and person-centered care were both being used in our country to describe these humanistic practices. Patient-centered care was most often used to describe practices carried out in healthcare settings (hospitals, physicians’ offices), while person-centered care was generally preferred and used in residential and home and community-based settings (Maslow 2013).

However, dementia experts across the country were very concerned about the lack of adoption and use of such practices in the care and support of people living with dementia. They recognized the need to create and publish a consensus white paper to advance professional understanding and use of person-centered dementia practices in all settings.

Creating the Framework for Person-Centered Dementia Care

From January 2012 through January 2013, a grassroots dementia initiative of more than sixty experts representing practice, policy, research, people living with dementia, and care partners, collaborated on a consensus framework for person-centered dementia care:

• Researchers at UCLA’s School of Public Health conducted an extensive review in peer-reviewed journals and gray literature (Levy-Storms 2013).


• Dementia experts delineated core values and person-centered practices.
  


• A smaller team wrote the final white paper, “Dementia Care: The Quality Chasm,” which continues to be widely disseminated throughout the world.

Most significantly, the paper extolled both quality of care and quality of life for people living with dementia by:

• Supporting their sense of self and personhood through relationship-based care and services.


• Providing individualized activities and meaningful engagement.


• Offering guidance to those who care for them.

As guest editor of Generations (2013), Katie Maslow noted that our nation faced (and continues to face) opportunities and challenges in advancing person-centered dementia practices. “Greater availability of person-centered care for all people could result in better care, better quality of life, and better functioning for people with dementia in a wide array of care settings. At present, however, the general lack of understanding about what person-centered means for people with dementia and how it can be implemented in day-to-day practice, coupled with stereotypical images of what people with dementia are like and negative assumptions about whether person-centered care is appropriate and feasible for these people, blocks the achievement of these positive outcomes.” (Maslow 2013.)

Sam Fazio, director of Special Projects, Constituent Services, for the Alzheimer’s Association in Chicago (2013), wrote, “The concept of person-centered care is not complicated. I think we have much more work helping care professionals embrace the underlying philosophy, and allowing it to influence care practices and organizational policy.”

Guiding Your Clients through Person-Centered Dementia Care

Your clients may represent some or all of the following life situations:

• a person living with dementia


• has a loved one with dementia at early/mid/late stage of the disease,


• does not have dementia nor a loved one with it at this moment in time.

Whatever their life situations, you are well-positioned to guide your clients on this highly-personal, often misunderstood journey through dementia.

According to the Alzheimer’s Association (2015), “The pace at which symptoms advance from mild to moderate to severe varies from person to person. As the disease progresses, cognitive and functional abilities decline. People need help with basic activities of daily living, such as bathing, dressing, eating, and using the bathroom. They can lose their ability to communicate, fail to recognize loved ones, and become bed-bound and reliant on around-the-clock care.”

Professionals who work with older adults can serve as knowledgeable, caring guides to clients facing this life-changing experience, whether they are the ones living with the condition, the family caregivers; non-caregiving family members, friends, or others within the communal network.

Encourage them to be reasonable, realistic, and open-hearted towards their loved one and themselves as they consider appropriate care, services, legal, and financial planning at different stages of dementia. Help them recognize that some issues and decisions will need to be reconsidered as the disease progresses. Ask them:

• At this point in time, what services or supports would make daily life better for your loved one? For you?


• At this point in time, what kinds of interactions and involvement would make your loved one’s life more meaningful? Yours more meaningful?


• At this point in time, what care and living environment will best serve your loved one’s wants and needs? Your wants and needs?


• Do you and your loved one have signed documents reflecting your personal health care, longterm care and end-of-life care wishes?


• Do you and your loved one have your legal and financial documents in order, including power of attorney and wills?

When evaluating in-home services or community-based settings (i.e., hospital, assisted living, nursing home), make your clients aware that certain interrelated elements are foundational in fostering positive care experiences:

• Direct caregivers are trained in knowing the person as an individual, creating authentic relationships with individual, being flexible and adaptable in routines based on understanding of individual’s preferences as well as needs, being sociable and spontaneous to engage the person in meaningful activities (Love 2013).
  


• Person-centered services require that provision of care and support is based upon individual preferences, values, lifestyle choices, and needs to support one’s unique rhythms of daily life (Love 2013).


• Physical and social environments “can have a significant impact on the overall well-being and quality of life for people who have dementia (in all settings). The goal of positive environments is to enable them to achieve maximum functioning, comfort, safety, and well-being.” (Love 2013)


• Each person’s experience of care and support. Jason A. Wolf, Ph.D. (2012) cogently noted that, “The healthcare experience…is based on every interaction a person and/or their family have on the care journey, and is ultimately measured by the very perceptions those individuals have of their experience.”

Sharing the Essence of Person-Centeredness

Essence is defined as:

• The intrinsic nature or indispensable quality of something, especially something abstract, that determines its character.


• A property or group of properties of something without which it would not exist or be what it is.

You cannot guide your clients through person-centered dementia care without recognizing and sharing the following three intrinsic and indispensable qualities that determine person-centeredness:

Personhood: See Me, Not My Dementia

In life, “perception is reality,” so help your clients to “see” themselves or their loved ones as the whole persons they are, rather than the condition they have. Such seeing requires knowing their preferences, values, and experiences. It requires treating them as we all wish to be treated—with dignity, respect, and individuality (Edvardsson et al. 2010). It means including them and ensuring their choices are reflected in care and life-planning processes. Fazio (2013) notes, “The loss of memory is not equivalent to the loss of self. If someone thinks of a person with dementia as someone without a self, they think of him or her as not being a person… As care partners, we need to be the support that maintains the self and we need to structure the environment and interactions within it to effectively do so.”

You can heighten your clients’ awareness and sensitivity by sharing the perspectives of those living with dementia who have written about their journey:

“How you relate to us has a big impact on the course of the disease. You can restore our personhood and give us a sense of being needed and valued…Give us reassurances, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain our social networks.” (Bryden 2005.)

Relationships, Connections, and Community

Having meaningful relationships and social connections are important aspects of one’s sense of belonging to a community. For individuals living with dementia, that sense of belonging and being included in a social community are especially important.

Although Carter Williams, founder of the Pioneer Network for person-centered culture change in Rochester, New York, did not have dementia, she beautifully captured the profound impact relationships had on her sense of being alive:

“When I am with someone with whom I have a relationship, I know that I am living. Surrounded by people who are strangers, funneled into daily routines that are unfamiliar and uncomfortable, my life is unknown to others. I’m not sure I am alive. It’s as though I have fallen out of life…Relationships are not only the heart of long-term care, they are the heart of life.” (Williams 2003.)

Purpose and Meaningful Engagement

Richard Leider (2012), founder of Inventure—The Purpose Company, noted counselor, and guest lecturer at Harvard Business School, spent more than thirty years interviewing thousands of people over sixty-five, asking each of them what mattered most to them in their lives. The overwhelming response by almost every one of them was that they hoped their lives had a purpose, that they in some way made a beneficial difference having lived.

Experiencing a meaningful life affirms an individual’s sense of self, purpose, and self-esteem. Having meaningful things to do adds purpose and enjoyment in daily life, and fosters emotional health and a sense of connection with others. Since people have different needs for solitude and socialization, what is purposeful and meaningful for each individual is unique to them (Love 2013).

Robert Bowles (2014), a wonderful gentleman living with Lewy Body Dementia (LBD), is a terrific role model for all those he mentors. He shares his outlook through blogs and online conversations.

“Even with the changes that have occurred in my life and the increased symptoms, I refuse to be discouraged. For me, a positive attitude is everything. It sets the stage for how I will live with LBD. I know that as I have become socially active and engaged, I have done better. Finding purpose in my life was the catalyst that made all of this possible. Dementia Mentors has an online memory café in the U.S. twice each week and once each week in Europe. This provides social interaction which is the lifeblood of living with dementia.”

In the poignant video, Person-Centered Matters, Lon Pinkowitz shared his personal perspective honed from years of being his father’s caregiver:

‘Life is best lived and most fulfilling with a sense of purpose. Starting with memory, Alzheimer’s slowly erodes aspects of living. It is important that we don’t further diminish the life of someone living with dementia, even if our actions are with the best of intentions. A life lived fully includes the continuing right to give as well as receive; to endure as well as take comfort; to move forward despite the possibility of missteps and errors. Caregiving in its best form means remaining aware of a person’s need for self-respect and purpose, especially as the need for assistance grows greater.” (Pasternak 2014.)

A Dementia-Capable and Dementia-Friendly Nation

Our nation can and must become dementia-capable and dementia-friendly. The Dementia Action Alliance is a volunteer national coalition engaged in changing our nation’s understanding of and attitudes about dementia, by promoting approaches to care and services that are person-and family-centered, and by serving as a trusted source for education, conversations, and advocacy. It affirms, “A nation joined will make the difference.”

You can serve as highly effective change agents in your communities by engaging others in meaningful conversations about quality of care and quality of life for their loved ones and themselves. You can emulate Margaret Wheatley’s (2002) practical approach to change: “Change begins when a few people start talking with one another about something they care about…We rediscover one another and our great human capacities. Together, we become capable of creating a future where all people can experience the blessing of a well-lived human life.”

Article written by Jackie Pinkowitz, M.Ed, co-leader of the Dementia Action Alliance and Board Chair of CCAL-Advancing Person-Centered Living.

Featured article in CSA Journal 64.

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Sources

Alzheimer’s Association. 2015. Alzheimer’s Disease Facts and Figures. Alzheimer’s and Dementia.11(3) 332+.

Batsch, N. L., and M.S. Mittelman. 2012. World Alzheimer Report 2012: Overcoming the stigma of dementia. London: Alzheimer’s Disease International, 75

Biggar, A. 2013. “The Philosophy-and Powerful Effects-of Person-Centered Care for People with Dementia.” Generations, Journal of the American Society on Aging 37(3) 4-5.

Bowles, R. 2014. “My Journey with Lewy Body Dementia.” Perspectives Newsletter of the Shiley-Marcos Alzheimer’s Disease Research Center (Fall 2014-Winter 2015) 20(1) 1-2.

Berrios, G.E. 1989. “Dementia: Historical overview.” In A. Burns and R. Levy (Eds.), Dementia. New York: Springer Publishing Co. Keefover, R.W. 2013. “Dementia. Presentation at the West Virginia

Bryden, C. 2005. Dancing with Dementia. London: Jessica Kingsley Publishers

Fazio, Sam. “The Individual is the Core— and Key— to Person-Centered Care. Generations, Journal of the American Society on Aging (2013) 37(3) 16-20.

Institute of Medicine. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press.

Kindness, T. F. 2015. “Am I Still “Me?” Truthfulkindness online blog. June 7, 2015. Accessed June 16, 2015.

Leider, R. 2012. “The Power of Purpose.” Accessed June 9, 2015.

Levy-Storms, Lene, and Lin Chen. 2013. “Person-Centered Dementia Care Literature Review, Appendix 3.” In Dementia Care: The Quality Chasm. K. Love et al. (eds). National Dementia Initiative. Falls Church, VA.. CCAL.

Love, Karen, and J. Pinkowitz. 2013. “Person-Centered Care for People with Dementia: A Theoretical and Conceptual Framework.” Generations, Journal of the American Society on Aging. 37(3) 23-29.

Love, Karen. 2013. “Dementia Care: Quality Chasm. National Dementia Initiative.” White paper. CCAL. Falls Church, Va.

Maslow, K. 2013. “Person-Centered Care for People with Dementia: Opportunities and Challenges.” Generations, Journal of the American Society on Aging (2013) 37(3) 8-15

National Alzheimer’s Project Act. Accessed June 4, 2015.

Pasternak, Kathryn. 2014. “Person-Centered Matters: Making Life Better for Someone Living with Dementia.” Pasternak Media LLC.

Prince, M., M. Guerchet, and M. Prina. 2013. “World Alzheimer Report 2013: Journey of Caring: An analysis of long-term care for dementia” Alzheimer’s Disease International, London.

Rogers, C. 1961. On Becoming a Person: A therapist’s view of psychotherapy. London: Constable.

Wheatley, M.J. 2002. Turning to One Another: Simple Conversations to Restore Hope to the Future. San Francisco: Berrett-Koehler Publishers, Inc.

Williams, C.C. 2003. “Relationship: The heart of life and long term care.” Pioneer Network, Rochester, NY.

Wolf, Jason, Ph.D. 2012. “Patients deserve both quality care and great experience.” Hospital Impact online blog. April 4, 2012. Accessed June, 4 2015.

Wortmann, M. 2013. “Overcoming the stigma of dementia.” Alzheimer’s & Dementia, The Journal of the Alzheimer’s Association, 9(4), P547.

Keeping Up With Communication

In the last 20 years the technology of communication has been rapidly accelerating. New ways to stay in touch are constantly being introduced and updated. With these fast and relentless developments it can sometimes be difficult for seniors to stay up to date with the most advanced forms of communication. But that does not mean that it’s not worthwhile for them to learn how!

New technologies can sometimes be intimidating for seniors, but as time goes on families tend to grow larger and also spread further apart. Busy families can mean that there is less time available for phone calls or visits, and you may soon find that you are not spending as much time under the same roof as you used to. Maintaining a strong familial connection is incredibly important; especially for seniors who are often living alone, or in an assisted living facility apart from family and loved ones. But when technology has made it easier than ever to stay in touch with the people in your life, these obstacles can be easy to overcome.

Seniors deserve every opportunity to keep in touch and stay up to date with the lives of their loved ones. Here are some simple and modern forms of communication that we believe seniors can benefit from.

Text Messaging

When you’re a member of a busy family, you know that the time you have available for lengthy conversations can be minimal. A quick check in via text or email is a great way to stay in touch with a family member that is always on the move. Sometimes it can be easy to dismiss text messaging as being a source of communication that is strictly for teens and millennials, but getting yourself up to speed with this popular form of communication might be the best thing that you can do to ensure you are not feeling disconnected from the people in your life.

However, texting does not come without some common complaints. The size of the keyboard on a smartphone can often seem miniscule to those who maybe more used to typing on a computer. And nowadays, younger family members tend to use unique and creative abbreviations more than actual words and sentences. When facing these challenges, keep in mind that texts can now be sent from a variety of devices with larger keyboards such as tablets, laptops, and even desktop computers. And if you’re having trouble deciphering what you’re teenage granddaughter is saying to you, remember that there are numerous helpful online guides to help you decipher the newest abbreviated slang.

Video Chat

Skepticism toward new technologies can many times be understandable. But the idea of video chat is something that can easily be seen as functional, beneficial, and even necessary! Maybe you have a number of family members who are scattered all across the country, or maybe the weather is too bad to go out, but you really want to see your grandson’s face. Video chat services and devices make you feel like you’re in the same room, even when you’re miles apart. There are a few popular versions to choose from, all of which give you the feeling of a true face to face conversation. Applications like Skype and Facetime can easily be accessed from your tablet or phone. And even if iPads and smartphones aren’t in the picture, new physical devices like the Nucleus home intercom system can give you a wonderful in person feel at the touch of a button! These home intercom devices like Nucleus provide you with high definition video quality, and a simple, straightforward interface that is both easy to learn and easy to use.

Video chat services and devices like these make it easier to check in, catch up, and feel connected with family and loved ones, when getting together in person just isn’t a possibility.

Social Media

Once thought to be a passing fad, it is now hard to imagine a world that could function without the immediate access to information provided by social media. At first, sites like Facebook were only used almost exclusively for staying in touch, but now we live in a world where news stories break on Twitter before they appear on mainstream media, and the President Of The United States tweets more often than he holds press conferences. When social media has become such an important source for not only news, but also communication and entertainment, we should encourage our seniors to become a part of it.

At this point, there are an overwhelming number of social media platforms available. This can certainly be intimidating to someone who is just setting foot into this world for the first time. But it’s really just a matter of finding the platform that works best for you. If you’re looking for a lot of communication, updates, and interactions with family and friends, Facebook might be perfect for you. If you prefer to sit back and be more of an observer, while still getting to see pictures of what people are doing, then Instagram may be a better fit! No matter what you settle on, there are plenty of online guides and tutorials that can help you get started. And once you do, there is no doubt that you will begin to feel more in touch with the world.

It’s 2017 and communication has come a long way from what it used to be. It’s strange to think that something as common as a phone call is now starting to be considered an “old-fashioned” way to communicate. But now that we find ourselves in an age of constant technological advancements, we should all be doing what we can to keep up. If we want to stay in touch, and up to date, we need to do our best to embrace these advancements so we can all stay better connected. These are only a few of the newest ways to stay in touch. What modern communication technique works the best for you?

	- By the Nucleus Marketing Team
The team at Nucleus understands the challenges of the modern family, and is working to make it easier for families to stay close and spontaneous. Therefore, making it possible to share what's most important: time together.

Find a Healing Community Online

It may seem like the last place to turn when you need emotional support for a health crisis, but websites can offer links to support groups in your area and forums in which to share ideas and concerns. You may also get help and find answers to your questions.

Recently, in the arthritis support group on the website Support Groups, someone newly diagnosed with rheumatoid arthritis sought encouragement from others: “I feel pretty overwhelmed and alone right now. . . . Any help and knowing [that] people are there would be appreciated.” In response, someone wrote comforting words: “[Rheumatoid arthritis] is not the end of the world, but it sure can seem like it when you finally get a diagnosis. . . . You need time to find your new normal. Hang in there. Reach out to others and be good to yourself.”

Two websites provide the opportunity to create an online community of caring people. CaringBridge allows you to create a page for yourself or someone else who is suffering. You can post updates/information on the hardship—whether it’s cancer, the loss of a loved one or becoming disabled—plus photos and videos. Friends can respond with words of support, ask questions and offer to help. Since 1997, more than half a million CaringBridge websites have been created.

Lotsa Helping Hands provides similar services but focuses more on organizing help for the person who needs it—whether it’s car rides to the hospital, meals or daily visits. Its Help Calendar automatically coordinates those who sign up, even sending reminders. You can also list information about medications, doctors, allergies and insurance.

Nearly 66 million Americans care for an aging, seriously ill or disabled family member or friend, estimates Medicare, which provides a website that offers resources, stories and newsletters for caregivers. Topics include what every caregiver needs to know, caring for someone with a chronic illness, caregiver support available in your area and a caregiver resource kit.

Local governments and Area Agencies on Aging often provide resources that can be found through their online sites. To find your Area Agency on Aging, use the federal government’s website Administration through Community Living. Many states also have websites that list local resources. For example, through Support Groups in Kansas, you can find different support groups and their phone numbers.

Organizations devoted to one illness or issue also have a wealth of resources through their websites. For example, the Alzheimer’s Association provides message boards and chat rooms, where a caregiver can post a question about the signs of dementia, or someone with Alzheimer’s can talk about their experience. At the same time, the association will connect you to a support group in your area for face-to-face conversation.

The American Cancer Society offers a wealth of information, including a National Cancer Information Center. This center provides information and support 24 hours a day, 365 days a year, via phone, email or live chat, to those facing cancer. An online Cancer Survivors Network connects you with others, via discussion boards, chat rooms and private email. You can create your own personal space to tell others about yourself, share photos, start an online journal (blog), contribute resources and more. The organization’s MyLifeLine.org provides a free Web page with which cancer patients and caregivers can connect with family and friends, share updates and photos, organize the help you need through the Helping Calendar and get support from friends and family.

The National Alliance on Mental Illness offers resources, including information about support groups, for those with or taking care of someone with mental illness.

Several groups offer support for those suffering from arthritis. One of them is Creaky Joints, which can link you to an arthritis support group near you.

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Find a Healing Community Online is a featured article in the February 2016 Senior Spirit newsletter.

Blog posting provided by Society of Certified Senior Advisors
www.csa.us

A Poodle or an Angel of Mercy?

At a nursing home in St. Paul, Minn., a poodle named Nala seems to instinctively know which residents need her the most—and finds her way to each one, sometimes by elevator. It’s impossible not to be impressed by the caring actions of this dog. Watch this clip from TV station KARE-11.

Warmer Weather Only One Reason to Move after Retirement

Many retirees, especially those who live in cold northern climates, dream about moving to warm states such as Florida. Often a big factor is achieving a lower cost of living, but beyond the financial reasons are other issues that can be just as important.

"We lived in Midwest college town. Hated November thru April weather. Neither daughter or son settled in same town—[lived] elsewhere in the Midwest. Our decision was Arizona vs. southwest Florida and chose the latter for warmer winter, closer to family (a much more pleasant drive to and from) and no income taxes. We decided on a 55+ community with golf. Best decision we ever made. We travel and visit children/grandchildren 3 months July thru September. Family loves to visit us in Florida. We fly back for Christmas."

— Morningstar.com's discussion forum

Where Are Retirees Moving? At one time, when people thought about retiring and moving to a warmer place, Florida was the main option. But retirees are flocking to many other warm areas. Retirees on the East Coast are drawn to the Southeast, anywhere from Virginia to Louisiana, but especially the Carolinas. In the West and Midwest, people are heading to Arizona for its sun and warmth. Top Retirements publishes an annual list of the most popular places to retire, based on its readers’ opinions. In 2015, the most popular regions were, not surprisingly, the Sunbelt, followed by the Northwest and mountain states. Since Top Retirements first started publishing the lists in 2007, Asheville, N.C., has been the first choice. The mountain town has a four-season climate and recreational/cultural opportunities such as the University of North Carolina. Here are the top 10 most popular places to retire: Asheville, N.C. Sarasota, Fla. Venice, Fla. Green Valley, Ariz. Beaufort, S.C. Charleston, S.C. Myrtle Beach, S.C. Prescott, Ariz. Fort Myers, Fla. Naples, Fla.

Weather

Warmer weather is one of the main reasons retirees move elsewhere. It’s appealing to get away from the snow and cold and not have to shovel snow, drive on icy streets or bundle up in parkas. However, warmer climates can vary greatly. Humidity, extremely hot summers or excessive rain are a few factors that may accompany temperate areas. Make sure you know what your comfort level is in terms of rain, heat and other conditions. On a similar note, do you enjoy the changing seasons? To enjoy those fall colors, you might have to endure some cooler rainy weather.

Family

Next to weather, being near family ranks as one of the top reasons for moving after retirement. Being closer to your family not only allows you to spend more time with your children and spoil your grandchildren, but your adult children might appreciate an extra babysitter. And, if your health deteriorates or you need help around your home, someone will be there.

Writes one person to the Morningstar forum: “We made this decision 16 years ago: moved to be near our children. That has worked out marvelously; we’ve been an intimate part of our grandchildren's lives."

However, some grandparents who value their independence might not want to be that close to grandchildren. The solution might be to move only a few hours’ drive away from the family, someplace still warmer, and close enough for fewer but longer visits. Others warn that you shouldn’t make your decision based solely on being close to your family, as your children may decide to move, or relationships can become strained.

Social network

For many people, having a good group of friends is more important than a lower cost of living or enjoying the sun’s warmth every day. "[M]y friends, clubs and activities are more important to me than a view of the ocean,” writes one person on the Morningstar forum.

This can mean staying in the community where you’ve established a network of good friends with whom you have dinner, take short trips and share all the aches and pains of getting older. Or it could mean moving to a different place where you know you can find a good community—through church groups, clubs or a senior center.

Having a good social network is particularly important after you retire and you lose your work relationships. When deciding where to move, you might look for a town or city that has a large concentration of people over 50 (unless you’d rather hang out with younger people).

Healthcare

When retirees list important factors for their move, near the top is access to quality and affordable doctors, hospitals and other health facilities. Look for towns with multiple hospitals within 30 miles as well as highly rated doctors and specialists.

Public transportation

Many able-bodied people don’t consider the fact that there may come a time when they can no longer drive. At that point, you’ll want to be somewhere with good public transportation so you can still live independently. Some local governments provide transportation specifically for seniors, often with wheelchair access and/or help getting in and off. Numerous agencies also have volunteers who are happy to drive seniors to and from doctors’ appointments, grocery stores and other necessary errands.

Activities and attractions

If dining out is a pleasurable part of your life, you should look for cities with a thriving dining scene. Or if you enjoy the opera, theater or museums, seek out a town with cultural amenities. Maybe shopping is your favorite activity; check out which areas have good shopping districts.

Perhaps you like to be physically active. Are there walking or bicycling trails nearby? Good golf courses? Facilities where you can swim? For some, proximity to a college is important so that you can take courses and challenge yourself with new ideas. University towns, such as Austin, Texas, are becoming popular retirement locations.

Familiarity and history

You may not realize how well established you’ve become in your community. When you consider relocating, think of all the connections and contacts you’ll have to reestablish: your doctor, car mechanic, favorite pizza place, gym club. These places and relationships may have taken years to find and cultivate. At the same time, your present home may hold a lot of memories, maybe both good and bad. These places have meaning for you and can be hard to replace.

A good way to check out cities you’re considering for retirement is to use AARP's livability index, which evaluates neighborhoods and communities for housing costs, social outlets, entertainment, work opportunities and access to medical care. At the same time, experts say that it’s a good idea to first rent for a month or two, especially in the most extreme season (hot, rainy), before moving to your desired location.

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Sources

“Planning to relocate after retirement? Here are 5 things to consider,” October 24, 2014, Fox News Latino,

“Q&A: How to find the ideal retirement location,” March 31, 2015, USA Today Money

“The Boomer Effect,” Aug. 2, 2012, National Association of Realtors

“Where Are Baby Boomers Going to Live?” July 16, 2013, U.S. News Money

“7 Reasons Not to Move in Retirement,” U.S. News Money

“How to Decide Whether to Relocate in Retirement,” Feb. 15, 2013, U.S. News Money

“9 Questions to Ask Before You Relocate,” Aug. 29, 2012, AARP

“Age in Place or Relocate During Retirement?,” June 14, 2015, Morningstar

“Relocating in retirement? Experts say look before leaping,” Sept. 16, 2015, CNBC

Warmer Weather Only One Reason to Move after Retirement is a featured article in the February 2016 Senior Spirit newsletter.

Blog posting provided by Society of Certified Senior Advisors
www.csa.us

FAMOUS & 65

Look Who’s Turning 65

Feb. 14—Terry Gross

Terry Gross is the host and co-executive producer of Fresh Air, an interview format radio show produced by WHYY-FM in Philadelphia and distributed throughout the United States by NPR. Since 1975 she has conducted thousands of interviews. Gross began her radio career in 1973 at WBFO, a public radio station in Buffalo, N.Y., where she started out as a volunteer. When she moved to WHYY-FM, Fresh Air was a local interview program. In 1985, Fresh Air with Terry Gross went national, being distributed weekly by NPR, and two years later became a daily program. The show reaches an audience of millions of daily listeners.

The San Francisco Chronicle wrote that Gross' interviews are "a remarkable blend of empathy, warmth, genuine curiosity and sharp intelligence." She prides herself on preparation; prior to interviewing guests, she reads their books, watches their movies and/or listens to their CDs. The Boston Phoenix opined that "Terry Gross . . . is almost certainly the best cultural interviewer in America, and one of the best all-around interviewers, period. Her smart, thoughtful questioning pushes her guests in unlikely directions. Her interviews are revelatory in a way other people's seldom are."

Some of her interviews have not gone smoothly. Gross asked Nancy Reagan about the lack of funding and mishandling of HIV/AIDS by her husband, President Ronald Reagan, which was not well received. At least a few interview subjects have exited their interviews early, including Lou Reed, Rolling Stone publisher Jann Wenner, Faye Dunaway and Monica Lewinsky. Gross has been married to Francis Davis, jazz critic of The Village Voice, since 1994.

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Feb. 15—Jane Seymour

Jane Seymour is a British-American actress best known for her performances in the James Bond film Live and Let Die (1973) and the television series Dr. Quinn, Medicine Woman (1993–1998). In 1973, she gained her first major television role in the series The Onedin Line and achieved international fame in her role as Bond Girl Solitaire in the James Bond film Live and Let Die. After that, she starred in Sinbad and the Eye of the Tiger (1975) and the Battlestar Galactica film (1978), and in the first five episodes of the television series. Seymour returned to the big screen in the comedy Oh Heavenly Dog opposite Chevy Chase.

In 1980, Seymour played opposite Christopher Reeve in Somewhere in Time, which marked the start of her friendship with the actor. In 1981, her role in the television film East of Eden won her a Golden Globe. In 1988, Seymour got the female lead in the 12-part television miniseries War and Remembrance. In the 1990s, Seymour earned popular and critical praise for her role as Dr. Michaela "Mike" Quinn in the television series Dr. Quinn, Medicine Woman and its television sequels (1993–2001). Her work on the series earned her a second Golden Globe Award.

In the 1980s, Seymour began a career as a writer of self-help and inspirational books, including Jane Seymour's Guide to Romantic Living (1986) and Among Angels (2010). She also co-authored several children's books with her then-husband James Keach. In 2008, Seymour replaced Selina Scott as the new face of fashion label CC (formerly known as Country Casuals). In 2008, she teamed up with and designed the "Open Heart Collection" for Kay Jewelers. Seymour was married four times and has two children.

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Feb. 15—Melissa Manchester

Melissa Manchester, a singer-songwriter and actress, began recording in the 1970s generally in the adult contemporary genre. She has also appeared as an actress on television, in films and on stage. The daughter of a bassoonist for the New York Metropolitan Opera, Manchester started a singing career at an early age. In the Manhattan club scene, she was discovered by Barry Manilow, who introduced her to Bette Midler. In 1971, she became a member of the Harlettes, the backup singers for Midler. Her debut album, Home to Myself, was released in 1973. Two years later, her album Melissa produced her first Top 10 hit, "Midnight Blue." In 1979, Manchester reached No. 10 with "Don't Cry Out Loud," for which she received a Grammy nomination for Best Pop Female Vocal Performance.

In 1982, her album You Should Hear How She Talks About You, won the 1983 Grammy for Best Pop Female Vocal Performance. Throughout the 1980s, Manchester continued to place singles on the Adult Contemporary charts, including a 1989 updating of Dionne Warwick's "Walk on By." In 2004, she returned with her first album in 10 years: When I Look Down That Road. Throughout the 1980s and 1990s, Manchester alternated recording with acting, appearing with Bette Midler in the film For the Boys, on the television series Blossom and co-writing and starring in the musical I Sent a Letter to My Love. In April 2007, she returned to theater, starring in the Chicago production of HATS! The Musical, a show to which she contributed two (cowritten) songs. Manchester’s 20th studio album, You Gotta Love the Life, released in February 2015, hit No. 17 on the Billboard Magazine Jazz Albums chart. The single "Feelin' for You," premiered at No. 2 on the smooth jazz charts.

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Feb. 23—Ed Lee "Too Tall" Jones

Ed Lee "Too Tall" Jones is a retired American football player who played 15 seasons (1974–1978, 1980–1989) in the National Football League (NFL) for the Dallas Cowboys. Jones was one of the most dominant defensive players of his era, playing in 16 playoff games and three Super Bowls. He was part of three NFC championship teams and the Super Bowl XII champion. His success batting down passes convinced the NFL to keep track of it as an official stat.

In high school, his basketball skills earned him All-America honors and scholarship offers from several Division I (NCAA) programs. As a senior, he fought a Golden Gloves boxing match, recording a knockout of his opponent in less than a minute. He played football under Tennessee State University head coach John Merritt. The 6-foot-9 Jones received his famous nickname during his first football practice, after a teammate mentioned that his pants didn't fit, because he was “too tall to play football." At Tennessee State, he became a 2-time All-American defensive lineman, playing on a team that only lost two games en route to winning the black college football national championship in 1971 and 1973.

The Dallas Cowboys drafted Jones, making him the first football player from a historically black college to go that high in the NFL draft. He became a starter at left defensive end during his second season in 1975, and by 1977 he had helped the Cowboys win Super Bowl XII. After playing five years for the Cowboys from 1974 through 1978, at 28 years old and in the prime of his athletic career, Jones left football to attempt a professional boxing career. From November 1979 through January 1980, he won the six bouts he fought as a heavyweight, recording five knockouts. He returned to play for the Dallas Cowboys for the 1980 season, earning All-Pro and Pro Bowl honors three times from 1981 to 1983. He retired at the end of the 1989 season, having never missed a game, playing the most games by any Cowboys player (232).

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Source: Wikipedia

FAMOUS & 65 is a featured article in the February 2016 Senior Spirit newsletter.

Blog posting provided by Society of Certified Senior Advisors
www.csa.us

Reward Yourself with the Right Credit Card

Choosing a credit card used to be a fairly simple decision. Today there’s a wealth of options for credit cards that reward you for your purchases: everything from free travel to cash back. How do you decide?

 

Types of Credit Cards

Know Your Terms When reviewing different credit cards, it helps to understand the lingo. Here are some key terms (from “Making Sense of Key Credit Card Terms,” Credit.com): Balance transfer. Cardholders pay off one card by making a charge to another. Promotional balance transfers offer lower interest rates for a limited period of time, allowing cardholders to save money by paying off their balance on cards that have a higher interest rate. However, these transactions often cost you a fee of 3 percent or more. Grace period. After a statement period closes, cardholders can pay their statement balance in full without the risk of accruing interest. Foreign transaction fee. Credit card companies impose this fee on all charges processed outside of the United States, regardless of where you are or what currency you use. Some credit cards offer the benefit of no foreign transaction fees. APR. The annual percentage rate is the rate of interest that would be accumulated over the course of a year. However, card issuers can add interest charges to the total, called compounding, every month or even every day. This makes the actual amount of interest charged during a year greater than the result of simply multiplying the balance by the interest rate expressed as an APR. Variable rate. Before the Credit Card Act of 2009, card issuers could change customer’s rates for virtually any reason, while referring to the rates as “fixed.” Thankfully, card issuers must now disclose their rates as variable, and these rates are typically tied to the prime rate, which is what banks charge to their best customers, and is typically 3 percent higher than the federal funds rate.

Rewards cards come in different forms. Unlike the traditional credit card, many have an annual fee and slightly higher interest rates. Be sure these expenses don’t cost more than the value you earn from membership.

Cash Back

The most common credit-card reward is cash back, where for every dollar you spend, you get a certain percentage in return. Most cards offer a fixed rate of 1 percent cash back on all purchases. However, Citi’s Double Cash became the first credit card to pay 2 percent cash back on purchases. (You earn 1 percent when you make the transaction and another 1 percent when you pay your bill on time.)

Loyalty Cards

The second rewards category links to a specific brand, such as Amazon, a hotel chain or airline. Airline credit cards are popular, especially for people who travel a lot, because the rewards are often worth more than the points you earn on a cash-back card—in the form of free mileage (with other perks, such as priority boarding or free checked luggage). Typically, the cardholder accumulates points from both making purchases and flying on the airline.

However, such loyalty cards can be more difficult to manage (and limit you to one airline or hotel chain), and availability is not always assured because of travel restrictions (like flying at peak times). If you are able to plan ahead, you’ll get the best deals. Many people, however, don’t want to deal with the hassle of figuring out how to make the most of their airline rewards card and let their free mileage go to waste.

For international travelers, it's critical you get a card that waives foreign transaction fees—often up to 3 percent, which can negate the value of earned points.

General rewards

For those who can’t decide between cash back and loyalty cards, a general (or transferable) credit card gives you points for purchases, which you can use for gift cards, electronics, hotel stays, plane tickets, jewelry, pet supplies or cash. You can transfer points to numerous airline and hotel loyalty programs. As with loyalty cards, the options can be confusing and overwhelming, so you need to stay on top of your account. Two of the better known transferable points cards are Membership Rewards and Chase Sapphire Ultimate Reward.

How to Decide

As with any decision, choosing a credit card starts with figuring out what you need the most. If you’re a big traveler or there’s one retail chain where you exclusively shop, the choice is obvious.

You can get help in your decision-making by going to websites that offer credit card comparisons and questions to ask yourself before getting a new card. Bankrate asks you about your credit history and future needs, such as “How is your credit?,” “Is this card for personal or business needs?” and “Will you be using this card to make a big purchase?” Your answers lead to a recommended type of card.

Another is NerdWallet, which asks you to select a type of credit card, such as rewards, cash-back, travel or balance transfer and, depending on your answer, lists the attributes of different brands of cards, including the annual fee, rewards rate and bonus value.

Many rewards cards offer bonuses just for signing up, ranging from 10,000 to 75,000 (or more) points within the first few months of opening your account, as long as you make a certain amount of purchases. Compare deals to see which is the best, and always remember to balance enticing promotions with annual fees.

Many people have more than one card, so you can strategize how best to use individual cards to get the rewards you want.

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Sources

“Find the best credit card for you,” Bankrate,

“This is the research you should do before picking a credit card,” Aug. 18, 2015, Business Insider

“Find the Right Credit Card for You,” Sept. 28, 2015, Time.com

“What type of card are you looking for?,” NerdWallet

“The Points Guy: How to pick a rewards card,” Bankrate

“Cash Or Miles: How to Choose the Best Credit Card ,” April 15, 2015, Forbes.com

Reward Yourself with the Right Credit Card is a featured article in the February 2016 Senior Spirit newsletter.

Blog posting provided by Society of Certified Senior Advisors
www.csa.us

Stand Up Straight! Exercise to Create Good Posture

We can avoid debilitating problems from poor posture by working now on core strength, balance and flexibility. The right exercises and physical training are good places to start.

Anyone who has been in a nursing home or assisted-living facility will have noticed older adults so stooped over that their heads are looking down rather than straight ahead. Although common, such conditions are not inevitable with aging. By working on our core muscles when we are younger, we can help prevent bad posture and everything that goes along with it: weak muscles, poor balance, limited flexibility and increased susceptibility to falls. On the other hand, good posture means your whole body is properly aligned and working.

“When your head is pulled forward, your torso is rolling forward and your chest caves in,” says Steven P. Weiniger, author of Stand Taller, Live Longer: An Anti-Aging Strategy. “You can’t take a deep breath. Studies have shown that people with weak posture are more likely to have incidents of cardiovascular and pulmonary issues” (quoted in the Huffington Post).

Benefits of Good Posture

Proper posture is more than standing up straight. It keeps you healthy and strong in various ways by:

• Keeping bones and joints in correct alignment, thus decreasing the wearing of joint surfaces that could result in degenerative arthritis and joint pain.


• Reducing muscle strain and fatigue in your neck, shoulders and lower back because bones and joints are better aligned and muscles therefore work more efficiently.


• Reducing the stress on the ligaments holding the spinal joints together, minimizing the likelihood of injury.


• Increasing your core strength by engaging core abdominal and back muscles, which contributes to good balance and physical agility.


• Decreasing risk of bone deformity because bones are constantly forming new cells and over time respond to chronic pressure to change shape.


• Improving your energy and mood. Several studies, notably by Dutch behavioral scientist Erik Peper, have linked sitting or standing up straight to being better able to remember positive memories and having more confidence.

What Is Good Posture?

Proper posture is more than just pulling back your shoulders. The spine has two natural curves, called the “double C” or “S” curves, which go from the base of your head to your shoulders and from the upper back to the base of the spine. When standing straight up, your weight should be evenly distributed on your feet.

The American Chiropractic Association offers tips for sitting and standing properly.

Sitting

• Keep your feet on the floor or on a footrest if they don't reach the floor.


• Avoid crossing your legs. Your ankles should be in front of your knees.


• Keep a small gap between the back of your knees and the front of your seat.


• Your knees should be at or below the level of your hips.


• Adjust the backrest of your chair to support your low- and mid-back or use a back support.


• Relax your shoulders and keep your forearms parallel to the ground.


• Avoid sitting in the same position for long periods of time.

Standing

• Bear your weight primarily on the balls of your feet.


• Keep your knees slightly bent.


• Keep your feet about shoulder-width apart.


• Let your arms hang naturally down the sides of the body.


• Stand straight and tall with your shoulders pulled backward.


• Tuck in your stomach.


• Keep your head level; your earlobes should be in line with your shoulders. Do not push your head forward, backward or to the side.


• Shift your weight from your toes to your heels, or from one foot to the other, if you have to stand for a long time.

Exercises to Help

Work on Balance and Alignment Here are two exercises to improve your balance and alignment (from the Huffington Post): Balance: Stand near a wall or, better yet, in a doorway. Adjust your posture. Then raise one leg and bend at the knee so that your thigh is parallel to the floor. Hold that position for 20 seconds. Repeat on the other side. If you feel that you cannot hold the pose, reach out to the wall or doorway to steady yourself. Over time you’ll be able to hold the pose without gripping the wall. This exercise trains your muscles to help you balance better. Alignment: Put your heels against the wall and then step forward about the length of your foot. Now lean back until your buttocks and back touch the wall. Push your head back, keeping it level until it touches the wall. If you cannot get your head back without tilting it, push it back as far as it will go while staying level. Hold it there for 20 seconds. In time, you should improve your alignment enough so your head will reach the wall.

Exercises that improve posture include cardio, strength and flexibility training. Classes such as Pilates or yoga help to strengthen and improve flexibility in the core muscles that support posture. Changes won’t happen quickly, because poor posture likely took a long time to create and will take some time to improve. Therefore, awareness of your posture should be an ongoing, daily practice.

The National Osteoporosis Foundation offers two posture exercises to get you started:

Head presses.

These help align your head over your shoulders and reduce tightness in your spine, neck and upper back.

• Sit in a chair with your middle and lower back well-supported.


• Move your head straight back as far as possible.


• Keep your chin level with the floor and look straight ahead. Do not tilt your chin or forehead.


• Hold your head back in this position for 3 or 4 seconds.


• Relax back into your normal posture for a second or two.


• Repeat five times.


• Repeat several times a day.

Standing back bends.

These stretch your spine and muscles for greater flexibility and movement.

• Stand with your feet shoulder-width apart and your buttocks against a counter or heavy table that won’t move.


• Place your hands at your waist. Pinch your shoulder blades back as if you are trying to squeeze a pencil between them. Then lean back slightly but stay comfortable.


• Keep your head in its normal position. The underneath part of the chin should be level with the ground. Look straight ahead.


• Hold for a slow count of five.


• Relax back into your normal posture.


• Repeat five times.


• Repeat several times a day.

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Sources

“Senior Fitness: Importance of good posture ,” Jan. 22, 2013, National Institute for Fitness and Sports

“3 Ways To Improve Your Posture—And Why You Should,” Sept. 28, 2013, Huffington Post

“Posture is Essential to Balance and Function,” National Center on Health, Physical Activity and Disability

“Stand straighter, live longer: Good posture can help you age better, “ June 7, 2013, Sun Sentinel

“3 Benefits of Improving Your Posture,” Health Status

“The Science Behind Posture and How It Affects Your Brain,” Life Hacker

“How posture influences mood, energy, thoughts,” Sept. 3, 2013. SF Gate

“Posture Exercises,” National Osteoporosis Foundation

Stand Up Straight! Exercise to Create Good Posture is a featured article in the February 2016 Senior Spirit newsletter.

Blog posting provided by Society of Certified Senior Advisors
www.csa.us

The Many Kinds of Dementias: Why Specific Diagnosis Matters

Not All Dementias Are The Same.

They present in many forms, and it’s important to recognize and understand the differences.

One of the most common referrals seen in primary are is for cognitive evaluation of older persons, whose families are concerned about cognitive decline. Often, the referral is bypassed completely and a primary care provider (PCP) will simply enter a diagnosis of dementia into the chart based on family report. A member of the drug class known as acetylcholinesterase inhibitors (ex. Donepezil [Aricpet], Rivastigmine [Excelon])—a type of drug that may treat the symptoms of Alzheimer’s dementia—will be prescribed and the family will go on its way.

Many people are content with this process, as it confirms what their families were suspecting, and gives them a method of addressing their concerns through use of a medication. Where there is value in simplifying the process of diagnosing dementia, there is a lot missed in simply labeling cognitive decline or loss of independence as dementia. This would be similar to dermatologist labeling all presenting problems as "rashes” and prescribing the same cream.

The term dementia encompasses a wide range of diagnoses and symptoms. Where there are common symptom presentations across dementias, the specific diagnoses are unique and carry with them differing prognoses (expectations of lifespan and the nature of decline), treatments, symptoms, drug interactions, and support needs for family members and caregivers.Families and patients often assume that dementia and Alzheimer’s are synonymous, and that all dementias follow a common course. This is not true. As this article will demonstrate, there is value in specific assessment and clarification of what kind of dementia a person has.

A Note about Terms

The term dementia comes from the Latin dēment, meaning “out of one’s mind” with the noun suffix “ia.” Because of the derogatory nature of this concept, there is a movement in the medical community to rename dementia to the major and minor neurocognitive disorders (APA 2013). Given that it is still the most commonly used term by professionals and systems, the neurocognitive disorders will continue to be referred to as “dementia” in this article due to this being the more familiar term. However, the transition is encouraged, because it emphasizes the biological foundations of dementia and reduces stigma.

The Commonalities Across Dementias

To understand why it is important to differentiate between the types of dementias (to the best of our ability, as this is not an exact science), it is important to first recognize their similarities. Most dementias have symptom commonalities that lead the people withthem and their families to believe that a diagnosis is warranted. It is these commonalities that cause families and practitioners to take pause in further diagnosis. Historically, the “treatment” of dementia was mostly focused on securing in-home health services and looking at possible placement in a facility.

Changes in Cognition

Memory loss is the first and most prominent complaint in patients and families concerned about dementias (Mayo Clinic 2014). It is important to note that what looks like memory loss may not always be related to the function of memory. People who have slower processing speed (it takes them longer to think about what others are saying), difficulty with attention, and problems with language, often look as though they cannot remember things, when it is another cognitive difficulty they are experiencing. Many people also notice and endorse difficulty finding words or speaking, confusion about previously familiar people and places, difficulty with complex tasks, and orientation (understanding when and where a person is). Changes in cognition are an aspect of all dementias. However, the nature of the change (true memory loss versus attention, language, or judgment) can help to identify a specific type of dementia.

Loss of Independence

All people with dementia have lost some independence in Activities of Daily Living (ADLs), such as brushing their teeth, dressing, feeding themselves, and Instrumental Activities of Daily Living (IADLs), such as driving or navigating transportation, taking medications, paying bills. To diagnose any type of dementia, it’s necessary to establish that the changes in cognition interfere with daily life, and require the addition of a caregiver or other person providing assistance.

“Masking,” “Shopping,” & Other Behaviors of Frustration to Caregivers

There is a certain level of fluctuation in cognition that exists in all dementias. One of the most common complaints heard from family members and caregivers is “he’s so good at the doctor’s, but at home, he’s not like this at all.” This is something referred to in the industry as “masking,” when people with a dementia are able to rally in the moment and have a more clear presentation. Often they try to distract professionals through use of humor or engaging areas of strength (telling historical stories they recall well), that make them appear to be higher functioning than they are. People with dementias are also prone to collecting and hiding things, something referred to as “shopping.”

These types of behaviors are common to many people with dementias. They are often the result of a mix of issues with impulse control, recognition, and sometimes paranoia—the feeling that they need to hide things before others take them. These behaviors are often quite frustrating to caregivers, who worry that people will suspect them of lying about the severity of symptoms or accuse them of taking things that belong to the person with dementia.

Why Diagnosis Matters

With all of the commonalities associated with dementias, it is reasonable to ask: “Why does it matter what kind of dementia someone has?” In some cases, the answer may be a matter of life and death. The medical community has come a long way from the 1694 Thomas Willis’s disease of “Stupidity and Foolishness… some at first crafty and ingenious, become by degrees dull, and at length foolish, by the mere declining of age.” (Berrios 1989.) It has transitioned to a model of understanding the biological basis for symptom presentations, and the significant variations in these presentations in people with evidence of dementia. We have also transitioned from focusing on in-home health or placement to medications, behavioral plans, caregiver support, and education.

There are many different forms of dementia, each with its own etiology (history of development), diagnosis, prognosis, and treatment. This article serves to demonstrate the value of further clarifying diagnosis rather than provide in depth information about each of these variations of dementia. Of the many different forms of dementia, there are five major types that account for the vast majority of diagnoses (Keefover 2013).

Alzheimer’s Disease (AD)

Alzheimer’s Disease (AD) is the most common form of dementia, accounting for a range of 60-80 percent of dementias, and it is the sixth leading cause of death in the United States (Alzheimer’s Association 2015). AD is a slow progressing disorder, and usually presents as memory loss, progressing to further impairment across cognitive domains. Because of the memory loss, people with Alzheimer’s will often begin to demonstrate those “shopping” behaviors and may appear paranoid or accusatory of caregivers. Alzheimer’s dementia is one of the few dementias for which acetylcholinesterase inhibitors (ex. Donepezil [Aricpet], Rivastigmine [Excelon], and a multi-receptor antagonist, known as memantine (Namenda) may actually slow symptoms.

This is important to note: These drugs are often prescribed for all people who are diagnosed with dementia. However, they are only FDA approved to treat Alzheimer’s dementia. Some evidence suggests that they may be helpful in the treatment of other dementias, but these are not confirmed. Much of this prescribing comes from a desire of the medical community to give the family something that makes them feel as though they can help. These medications are not without cost and some significant side effects, which are important to consider when assessing the benefits and costs of taking a medication that may not be approved to treat the dementia someone has.

Vascular Dementia (VD)

Vascular Dementia (VD) is a form of dementia resulting from vascular (relating to blood vessels) complications. It can often be the result of a series of strokes, hence its historical name “post-stroke” or “post-infarct” dementia, but a person does not have to have a stroke to have VD. It accounts for about 10 percent of dementias (Alzheimer’s Association 2015), and is one of the few dementias that has the potential for prevention. VD results from blockages in vessels caused by lifestyle choices (diet, exercise, smoking), some chronic conditions, and microscopic bleeding (Mayo Clinic 2014).

Unlike AD, VD often presents as impairment in judgment, reasoning, and executive functioning (poor decisions) rather than memory loss, although memory loss can be a part of VD. Knowing risk factors for VD can serve to prevent development of the diagnosis in the first place. Once the diagnosis of VD is made, it can result in treatment of the underlying vascular conditions to slow decline. Due to the lifestyle choicesof many Americans, many people develop something called “mixed” dementia, which is a combination of AD and VD.

Lewy Body Dementia (LBD)

Lewy Body Dementia (LBD) is a lesserknown, and therefore under-diagnosed form of dementia that may actually be the second most common form of dementia in the United States (LBDA 2014). It is characterized by cognitive changes in combination with problems with movement (issues with walking, stability, tremors) and visual hallucinations. People with LBD may also have more variable cognition than people with other forms of dementia (more dramatic changes in alertness and memory). There is also some evidence of REM sleep disorder throughout the life history of people with LBD.

The importance of knowing the diagnosis of LBD is most significant when it comes to medications. According to the LBDA (2014), “Up to 50 percent of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity, and breakdown that can lead to kidney failure).”

Given that neuoleptics are prescribed in many AD patients for behavioral and sleep problems, this is very important to know. LBD may also be one of the fastest progressing dementias, with an average life expectancy following diagnosis of about five years.

Parkinson’s Disease (PD)

Formerly its own diagnosis, PD is being combined with LBD due to their common foundations—protein deposits named after their founder “Lewy” in the brain. The difference between PD and LBD is mostly in the order of presentation of symptoms. PD presents first as a movement disorder, due to damage by the disease to the part of the brain that manages movement (Alzheimer’s Association, 2015). Parkinson’s disease is more common than previously thought. An estimated 2 percent of adults aged sixty-five and older have this neurological disorder. One of the principal treatments of PD is l-dopa, which is a synthetic drug designed to increase the amount of dopamine in the brain, which results in better movement. Sadly, a common side effect of increasing dopamine is hallucinations, for which doctors often prescribe the neuroleptics that are very dangerous to LBD and PD patients. Knowing the diagnosis of PD or LBD can help families work with their professionals to prevent possible dangerous side effects.

Fronto-Temporal Dementia (FTD)

FTD results from degeneration of the frontal lobes (responsible for reasoning, decision making, impulse control, and some emotion regulation), and the temporal lobes (responsible for language and some aspects of memory). FTD comes in three forms, known as clinical subtypes:

• behavioral variant (marked by personality changes,impulse control and sometimes violence)
• semantic dementia (the loss of verbal memory and understanding)
• and progressive non-fluent aphasia (changes in the ability to speak, read, write, and understand what others are saying) (AFTD 2015, UCSF 2015)

All dementias are heartbreaking and difficult for patients and families to go through, but FTD is particularly insidious in some of its symptoms. There is significant value in knowing this diagnosis in the areas of preparing and educating family and caregivers. People with FTD have some of the greatest difficulty communicating and can become violent with caregivers.

Due to the unique variations across types, one can begin to see the value of more specific diagnosis, whether it relates to medication planning, family education, and treatment considerations. Why then, is it still common to see “dementia” diagnosed in the medical community? It’s a complicated process to establish diagnosis, and even then, the common saying amongst medical professionals is the only true way to truly know what type of dementia someone has is through autopsy. However with technology like MRI and CT scans, neuropsychological assessment, family history and interview, we are getting much better at diagnosing specific types of dementia during the lifetime of individuals.

Once a probable diagnosis is made, medical professionals can pair with families to provide education on the type of dementia, common presentations, methods of coping with changes, and long-term planning. Even something as simple as explaining to a family member that hallucinations are common with LBD patients can serve to dramatically reduce acute anxiety and give caregivers peace of mind.

Families and patients often demonstrate benefit from clarification of diagnosis. There is power in a name. It often leads to finding the community centered around the name. Each form of dementia has its own association with further information, groups and support options. It also aids the family and the patient in engaging their medical community to join with them in the progression of the disease and long-term care options.

Article written by Carilyn Ellis, PsyD, resident psychologist with the Samaritan Waldport Clinic in Waldport, Oregon.

Featured article in CSA Journal 64.

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Sources

Alzheimer’s Association 2015. “Types of dementia.” Retrieved from www.alz.org

— 2015. Parkinson’s disease. Retrived from www.alz.org

American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Arlington, VA: American Psychiatric Association Publishing.

Association for Fronto-Temporal Degeneration (AFTD). 2015.“Nonfluent/agrammatic variant primary progressive aphasia.” Retrieved from www.theaftd.org

Berrios, G.E. 1989. “Dementia: Historical overview.” In A. Burns and R. Levy (Eds.), Dementia. New York: Springer Publishing Co. Keefover, R.W. 2013. “Dementia. Presentation at the West Virginia

Integrated Behavioral Health Conference.” Retrieved from www.dhhr.wv.gov

Lewy Body Dementia Association (LBDA). 2014. “LBD diagnosis.” Retrieved from www.lbda.org

Mayo Clinic. 2014. “Vascular dementia.” Retrieved from www.mayoclinic.org

University of California San Francisco (UCSF). 2015. “Fronto-temporal dementia.” Retrieved from memory.ucsf.edu/ftd/