Stay Fit to Slash Dementia Risk

There’s more reason to work out than ever after a major study shows significantly decreased risk of dementia for women who are healthiest.

Keeping in shape offers a range of benefits, from a healthier heart to reduced metabolic diseases. But a recent study offers evidence that staying fit can also keep you from joining more than 50 million people worldwide who suffer some form of dementia.

The study was done with women, who suffer Alzheimer’s at greater numbers than men. Astonishingly, women who were very physically fit in middle age were found to have nearly a 90 percent decreased risk of a dementia diagnosis later in life, according to research from the University of Gothenburg in Sweden and published in the journal Neurology.

The long-term study included 191 women with an average age of 50 at the start. Their cardiovascular fitness was evaluated with a bicycle stress test. Participants were asked to exercise until they felt physically exhausted, revealing their peak cardiovascular capacity.

Following these assessments, the women were assigned categories of fitness. Forty participants were highly fit, 92 fell into the medium category, and 59 women exhibited a low fitness level. Women in the lowest category included some who had to interrupt exercise because of chest pain, hypertension or other cardiovascular symptoms. Study participants were followed more than four decades, during which they were tested for dementia six times. Over the course of 44 years, 44 participants developed the condition.

However, while 32 percent of the least fit women showed evidence of the disease, the figure was reduced to 25 percent of moderately fit participants. But the most surprising finding was among the fittest group, where a mere 5 percent were diagnosed with dementia.

Women in the fittest group at middle age reduced their likelihood of being diagnosed with dementia by 88 percent when compared to their moderately fit counterparts. Participants in the fittest group also received that diagnosis an average of 11 years later than moderately fit women.

While the study is not definitive, it does suggest a strong correlation between midlife fitness and the development of dementia.

If you need some inspiration to get moving, here are 11 older adults who have maintained exceptional fitness later in life.

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Sources

“High fitness may slash dementia risk, study says,” Medical News Today.

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

Proven Best Way to Decrease Your Risk for Alzheimer’s and Dementia

The most recent comprehensive research analysis from hundreds of studies finds three practices may reduce cognitive decline.

Strong evidence that anything prevents Alzheimer’s disease is lacking, but a few changes can likely delay memory loss, according to a 2017 review by the National Academies of Sciences, Engineering and Medicine.

Specific memory training, consistent exercise and controlling high blood pressure offer the best hope, the committee concluded. Members examined the best research on ways to limit or prevent cognitive impairment, the loss of ability to think clearly and make decisions, that often afflicts older adults.

The number of Americans with Alzheimer’s is more than 5 million, and growing as the overall population ages. Treatments such as Aricept (donezepil) and Namenda boost working brain cells with unaffected neurons, but there is no cure.

Commercial Products Are Not Effective

There is no evidence that the profusion of online and commercial products, from supplements to memory games, slow or prevent the decline, according to experts.

Can Lumosity Prevent or Slow Mental Decline? Many people play computer brain games such as Lumosity, hoping to avoid cognitive decline. A recent study analysis (see main article) indicates brain games may slow the advance of Alzheimer’s and dementia. “We’re very concerned about the brain game industry taking this and running with it, and saying the National Academy of Science has shown that cognitive training is going to forestall cognitive decline, and we have our brain game here,” said Dr. Ronald Petersen, an Alzheimer’s expert at the Mayo Clinic and member of the review committee. Lumosity was fined several million dollars last year for claiming that their "games can help users perform better at work and in school, and reduce or delay cognitive impairment associated with age and other serious health conditions." According to the Federal Trade Commission, Lumosity didn’t have data to support its ads. "Lumosity preyed on consumers' fears about age-related cognitive decline, suggesting their games could stave off memory loss, dementia and even Alzheimer's disease,” said Director of the FTC’s Bureau of Consumer Protection Jessica Rich. A new study published by the Journal of Neuroscience has more bad news for the company. It found “no effect of commercial cognitive training on neural activity during decision-making.” What subjects did get better at, whether using Lumosity or standard online video games, was the specific game they were playing. The study found no evidence that this task-specific improvement would transfer to other cognitive tasks.

“At present, there are no pharmacologic or lifestyle interventions that will prevent mild cognitive impairment or Alzheimer's disease,” said Dr. Ronald Petersen, an Alzheimer’s expert at the Mayo Clinic, who was on the committee.

“All this is not new, but this review is the strongest evidence base we have,” Petersen added.

“We have all been exposed to a study here, a study there. One suggests this intervention is beneficial, the other finds it’s not. This review looked at the totality of literature over the last six years and put it to the most rigorous test you can imagine.”

Cognitive Training, Exercise and Blood Pressure Control

“Even though clinical trials have not conclusively supported the three interventions discussed in our report, the evidence is strong enough to suggest the public should at least have access to these results to help inform their decisions about how they can invest their time and resources to maintain brain health with aging,” said Dr. Alan Leshner, chair of the committee and CEO emeritus of the American Association for the Advancement of Science.

“The strongest evidence was in the area of cognitive training,” Petersen said.

Do crossword puzzles or Sudoku qualify? They won’t hurt, but studies show gains from specialized training called mnemonic strategies.

Mnemonic memory programs include face-name recognition and name-face learning, number mnemonics, story mnemonics, and the method of loci, where key details are kept along a familiar route or place you recall.

Additionally, training programs often entail instruction on how to take advantage of environmental supports, called external memory aids.

“Can you, in fact, find a new way to try to remember a list of grocery items?” Peterson asked. Also, try figuring out restaurant tips in your head, he advised, instead of using a calculator or your smartphone.

Commercial products have not proven they help, Petersen cautioned. See sidebar for information about common commercial brain games.

Exercise Helps Your Aging Brain

Several studies indicate that exercise is important.

“Here we're talking about modest aerobic exercise,” Petersen said. Brisk walking and cycling are good choices.

“How much? Maybe 150 minutes a week—30 minutes five times, 50 minutes three times—can have an effect on reducing cognitive impairment later in life,” Petersen said.

A preponderance of documentation demonstrates the health benefits of physical activity. Some of these benefits, such as stroke prevention, are causally related to brain health.

“Is it going to prevent Alzheimer's disease?” asked Peterson. “I can't say that. But I think it may have an effect on reducing cognitive impairment.”

Control Blood Pressure to Help Brain Function

Managing hypertension by controlling blood pressure seems to delay vascular dementia, according to the committee. High blood pressure damages delicate blood vessels in the brain.

Controlling blood pressure is particularly important during midlife, from ages 35 to 65. There is also strong evidence that using antihypertensive medications and making lifestyle changes to manage blood pressure can help prevent stroke and cardiovascular disease.

Conclusions

None of the evidence is strong enough to justify a public education campaign, the committee of experts found. But it did point to the need for more and larger randomized, controlled research.

“We’re all urgently seeking ways to prevent dementia and cognitive decline with age,” said Dr. Richard Hodes, director of the National Institute on Aging.

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Sources

“Interventions to prevent cognitive decline, dementia,” ScienceDaily.

“More Bad News For Brain-Training Games,” NPR.

“No Effect of Commercial Cognitive Training on Neural Activity During Decision-Making,” Journal of Neuroscience.

“What Can Prevent Alzheimer’s? Here’s What the Evidence Shows,” NBC News.

“Memory training interventions for older adults: A meta-analysis,” National Center for Biotechnology Information.

“Lifestyle Program May Slow Cognitive Decline,” American Academy of Neurology.

“A 2 year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): a randomised controlled trial,” The Lancet Journals.

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

Senior Runs to Raise Money for Alzheimer’s

After Jack Fussell lost his father to the disease and then almost died from an ulcer, he committed to a life of health and giving back.

A combination of factors led Jack Fussell, in his 60s, to run from one end of the country to the other. First was the death of his father from Alzheimer’s disease. A year later, he was diagnosed with a bleeding ulcer and told he had only one year left to live. The Georgia resident decided it was time to turn his life around and commit to a healthy lifestyle. He started by running and dropped his weight from 250 to 100 pounds.

At some point, he decided his exercise regimen should be for a good cause—to raise awareness and money for Alzheimer’s. In 2013, at age 62, he ran from Georgia to California. The following year, he repeated the trip, although he ran only part of the time, preferring to use a car so he could meet with more people. He did some 50 TV and 100 newspaper interviews, plus met with four governors. He’s met with students and chambers of commerce—whomever he could find to talk to about the disease that currently affects 5 million Americans, at a cost of $259 billion annually. Every 66 seconds, someone in the U.S. is diagnosed with Alzheimer’s.

Want to Make a Difference? Download the Charity Miles app for Android and iPhone and you too can help support charities when you walk, run, or bike. Simply launch the app, choose a charity, and the selected charity then earns money for every mile covered. Walkers and runners earn 25 cents per mile; bikers earn 10 cents per mile.

Alzheimer’s is devastating,” Fussell says. “It’s hard for the individual that is diagnosed, but it’s really the families and caregivers that struggle the most. Not only do people need to donate to this cause, but they need to know how serious it is.”

Fussell was recognized by Maria Shriver on mariashriver.com as an “Architect of Change”—people who see a problem and who do something about it.

He said he was drawing attention to Alzheimer’s for two reasons. First, he wants to let caregivers know that they can get help from the Alzheimer’s Association, which reports that 40 percent of caregivers die before the patients because of the stress. Second, he wants to inform the general public “how devastating [Alzheimer’s] is to patients and caregivers . . . so maybe you will feel what you need to feel to call lawmakers and put it on their radar.“

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Sources

“About my Epic Journey from Savannah, GA to Monterey, California to #ENDALZ,” April 3, 2017, Across the Land.

“Across the Land - Jack Fussell,” Alzheimer’s Association.

“Running Across America to Spread Awareness for Alzheimer’s,” March 23, 2015, mariashriver.com.

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

Dirty Air Clogs the Mind

Air pollution linked to increased risk for dementias such as Alzheimer’s disease.

For years now scientists have warned the population about human beings’ impact on the Earth and its future. Air pollution such as pollutants from power plants, cars, and tobacco create harmful effects on the environment and are also extremely detrimental to our health. These pollutants have long been found to increase the risks of developing chronic respiratory disease, lung cancer, and heart disease. However, new emerging research has found evidence that air pollution may also increase the risk of Alzheimer’s disease and dementia in the United States’ growing older adult population. This is extremely important as these diseases affect a large portion of the older adult population in the U.S. and is the sixth leading cause of death according to the Center of Disease Control and Prevention.

Current Research

A study, conducted by the University of South California and published on 31 January 2017, is one of only a few studies investigating a link between pollution and brain health. It was conducted as a decade-long longitudinal study of 3,647 women between the ages of 65 and 79 in the United States, none of which had dementia at the start of the study. Researchers tracked the women’s cognitive ability and mental health from 1995 to 2010 and positioned this against the Environmental Protection Agency’s reported pollution levels for each woman’s city of residence. These researchers also used newly designed technology to investigate the effects of pollutants on mice. This technology allowed the scientists to collect samples of air particles from heavily polluted cities and to control its exposure to female mice. They then assessed the mice over a fifteen-week period for any adverse neurodevelopmental or degenerative neuro health effects.

Research Findings

The findings ultimately showed a connection between pollution and neurodegenerative health issues.

• After being exposed to air pollution for fifteen weeks, the female mice had 60 percent more amyloid plaque, which are clusters of protein associated with the Alzheimer’s disease, than mice that were not exposed to the particle air pollution.


• In the longitudinal study, researchers found – after the consideration of extraneous variables – that older women living in areas where air pollution particles exceed federal safety standards may be at an 81 percent higher risk for cognitive decline and are 92 percent more likely to develop dementia, including Alzheimer’s disease.


• Increases in the risk for Alzheimer’s were more notable for women with the APOE4 variant gene, which has been found to lead to an inclination towards Alzheimer’s. Women who had the variant gene were nearly three times more likely to develop dementia when exposed to high levels of pollution compared to their non-carrier counterparts. Among carriers of the gene, older women exposed to air pollution were four times more likely than those in cleaner air environments, to develop a measurable loss of memory and reasoning skills.


• The researchers also calculated that if their findings were extended to the general population, air pollution might be the culprit for about 21 percent of all dementia cases.

Other Relevant Research

Another longitudinal study published in 2012 produced similar findings, connecting air pollution to memory loss and dementia. This study included a large sample size of 19,000 nurses in their 70s living across the United States over a four-year period. Women who lived in areas with worse air quality tended to score lower on memory and cognitive tests than those in cleaner areas. It showed that exposure to high levels of pollution was equivalent to about a two-year decline in brain function, and carried the potential for an earlier onset of Alzheimer’s and other forms of dementia. These researchers estimate that this exposure to pollutants accounts for about two million cases of Alzheimer’s over a forty-year period.

Discussion of Research and Impact to the United States

It is extremely difficult to establish a definite and direct link between air pollution and Alzheimer’s due to the number of extraneous factors involved such as race, ethnicity, lifestyle, and other health factors. It is important to note that correlation does not necessarily mean causation. However, this new research is one of the first to show that the intake of air pollutants serves as a vulnerability to brain aging.

Characterized by memory loss and a decline in reasoning and thinking skills, Alzheimer’s disease affects 1 in 9 Americans over the age of 65 and a third of Americans over the age of 85. The typical life expectancy after an Alzheimer’s diagnosis is 4 to 8 years and the disease is the 6th leading cause of death in the United States. With about 20 percent of these cases attributing to over-exposure to air pollution – according to the University of South California study – it is highly important to investigate further, in order to help protect our current and future older adults.

Less than a third of United States counties have ozone or pollution particle monitors, per the American Lung Association. The current regulations and health standards for particle pollution may not be tough enough to protect people with a higher risk for neurodegenerative diseases. This is a major problem because even though pollution is more concentrated in cities, it has no borders and can become a major global crisis.

Prevention of Exposure to Air Pollution and Its Risks

If you are concerned about your intake of air pollution and your risk for neurodegenerative diseases, consider these prevention measures:

Watch your local air quality: The Environmental Protection Agency has a real-time national air quality map that provides you with your current local air quality and predictions for the next day. When the pollution levels are high, you may want to consider staying indoors and avoiding outdoor exercises.

Clean your air indoors: Although you can’t control the outside air, you can take measures to clean your air indoors. Run your HVAC fan to filter out pollen and other irritants; change HVAC filters often; test your home for radon, lead, and asbestos; use a small air purifier; and avoid the use of wood-burning stoves and/or fireplaces.

Do your part to reduce air pollution: One person can do a lot to cut-down on air pollution. You can save energy around your house, carpool or use public transportation, improve your fuel economy, and cut back on the amount of household waste your produce.

	- By Jess Walter, Freelance Writer.

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Sources

“2016 Alzheimer's Disease Facts and Figures” Alzheimer's Association.

“State of the Air 2016 Report” American Lung Association.

“Study suggests air pollution increases risk for Alzheimer's disease,” Feb. 1, 2017, United Press International.

“Is There A Connection Between Dementia and Dirty Air?,” SeniorAdvisor.com.

“The surprising link between air pollution and Alzheimer’s disease” February 15, 2017, Los Angeles Times.

“Air Pollution May Raise Dementia Risk” The Fisher Center for Alzheimer's Research Foundation.

Is It MCI, Dementia, or Something Else?

Does a client, friend or family member who is otherwise normal show these symptoms or express concern about any of them?

The person:

• Has difficulty remembering important information, or making sound decisions, or finding words that is not normal for the person’s age and education


• Has memory loss


• Is disoriented in familiar surroundings


• Shows increased impulsiveness or evidence of poor judgment

If so, encourage the person to see a doctor for an evaluation.

These symptoms could be signs of Mild Cognitive Impairment (MCI), early dementia, or a psychological condition -- depression, irritability, aggression, anxiety, or apathy.

The key difference between MCI and dementia is that MCI is not severe enough to interfere with the person’s everyday independent functioning and ability to perform the normal six daily activities of living – eating, bathing, dressing, toileting, continence, and walking/transferring (Alzheimer’s Association, n.d.).

At the same time, MCI is a noticeable decline in cognitive functioning that is measurable. Persons with MCI have an increased risk of developing dementia, but not all people with MCI will get worse. Some actually may even improve. According to the Alzheimer’s Association, MCI affects 10 to 20 percent of those 65 or older.

MCI can be hard to pinpoint because its causes are not known, and no tests or procedures definitively diagnose it. MCI is a clinical diagnosis best made by a doctor through a medical workup:

• The doctor’s professional judgment


• A thorough medical history -- current symptoms, health history, family history of memory disorders


• An assessment of the person’s ability to function independently and perform daily activities


• Input from a family member or reliable friend that gives additional perspective about the changes


• An assessment of the person’s mental status and mood


• A neurological exam and neuropsychological testing

Treatment for MCI

There are no medications to stop, treat, or reverse MCI that are approved by the US Food and Drug Administration (FDA). Also, drugs that treat other dementia symptoms do not show any lasting benefits for MCI. Consequently, treatment for MCI focuses on two areas:

• Slowing the decline in thinking skills


• Maintaining cognitive function

And uses many of the same strategies for maintaining a healthy brain, including:

• Limiting smoking and alcohol intake


• Being socially engaged


• Doing crossword puzzles and brain teasers


• Eating foods such as salmon, halibut and tuna; almonds, pecans and walnuts, and blueberries, red grapes and spinach, broccoli and beets.

For more information and practical tips for reducing the risk of MCI or maintaining quality of life with a diagnosis of MCI, see this fact sheet from the Alzheimer’s Association:

 

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Sources

“Mild Cognitive Impairment,” Alzheimer’s Association.

Society of Certified Senior Advisors, Working with Older Adults: A Professional’s Guide to Contemporary Issues of Aging (2015).

The Working with Older Adults course offered by the Society of Certified Senior Advisors gives professionals a practical, comprehensive understanding of health, social and financial issues that are important to many older adults, including ethical issues specific to aging. For more information, or to enroll in a class, click here.

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+.

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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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