Category / Alzheimers Dementia

Memory Café: Savoring Special Moments

September 6, 2019

Respect for our elders is a canon we all try to be mindful of, but in today’s society, older adults with Alzheimer’s disease and related dementias often find themselves isolated from mainstream society as they lose their ability to follow “customary” social rules.

This often results in loneliness. Trips outside the home go from fun shopping trips and visits to a favorite restaurant, to only a trip to the doctor to address their disease. The fun seems to disappear and the individual living with the disease, and their caregiver, do not get enough interactions with others who genuinely understand their journey.

The good news is that there are places created specifically for these older adults and their caregivers to connect with other people who are on the same path. Where? At a Memory Café. These Memory Cafés provide important social interaction in an environment that everyone can enjoy.

Coming Together

In 1997, Dutch psychiatrist Bere Miesen introduced the idea of a place where those with Alzheimer’s and related dementias can intermingle and enjoy life in a warm and safe environment. The concept of Memory Cafés spread throughout Europe and were so well received that they eventually made their way to the U.S. In 2008, nationally renowned Alzheimer’s specialist Dr. Jytte Fogh Lokvig opened the first Alzheimer’s Café in Santa Fe, NM.

What is a Memory Café?

Those affected by memory loss and their care partners gather to talk, share and take a much needed break from the disease in an accepting, casual environment. Cafes are made up of a group of like-minded individuals run by compassionate volunteers and/or those who work in the field of dementia care. As of 2013, more than 85 Cafés are helping people enjoy more special moments together throughout the U.S., and that number continues to grow.

Although these Cafes all share the same fundamental goal of providing a fulfilling, enjoyable experience, no two Memory Cafés are exactly alike. That’s because each Café is a grassroots effort organized, operated and maintained by the people who attend them, giving every Cafe its own personality and flavor!

For instance, Memory Cafés offer a variety of fun, stimulating activities, from singing to crafting. Laughter, camaraderie and relaxation are mainstays, all to provide support for both caregivers and those who are cared for.

While each Café is different, they all serve an important role in our society today. Alzheimer’s diagnoses are multiplying annually, according to the Alzheimer’s Association. In the U.S., there are already more than 5.4 million people living with the disease today. While it can severely affect the individual with the diagnosis, memory loss also touches the lives of their caregivers and all of those who love them.

Find out if there is a Memory Café near you!

Presbyterian SeniorCare Network hosts free monthly Memory Cafes in three locations. These Cafes are designed exclusively for individuals with dementia and their caregivers and feature a casual, supportive environment full of conversation and meaningful connections.

Washington area

  • Where: Eat’n Park, 320 Oak Spring Rd, Washington, PA 15301 (reserved room)
  • When: Held on the 3rd Saturday of each month starting May 20
  • Time: 10:00 a.m. – 11:30 a.m.
  • RSVP not required – just pop on in! Coffee and cookies provided.

Oakmont area

  • Where: Somma Pizza, 380 Route 909, Verona, PA 15147 (private area)
  • When: Held on the 2nd Wednesday of each month starting June 14
  • Time: 11:30 a.m. to 1 p.m.
  • RSVP not required – just pop on in! Snacks provided.

Erie area

  • Where: Lincoln Community Center Library, 1255 Manchester Road, Erie, PA 16505
  • When: Held on the 2nd and 4th Tuesday of each month (hosted in collaboration with the Alzheimer's Association)  
  • Time: 10 a.m. to 12 p.m.
  • RSVP not required – just pop on in! Snacks provided

For more information, visit

This Activities Program Engages and Calms People With Dementia

September 5, 2019

It tailors activities to each individual's abilities and interests
By Melba Newsome

For people with dementia, having nothing to do can contribute to agitation, frustration and a feeling of loss of control and well-being. It is a situation family caregivers often encounter.

Laura Gitlin, distinguished professor and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, has spent more than three decades developing non-pharmacological behavioral approaches to helping adults with dementia age in place.

“It’s important to assess not just what the person can’t do, but also what they can do.”

Gitlin’s most recent approach, the Tailored Activity Program (TAP), has been shown to help manage critical behavioral symptoms in people with dementia while reducing the caregiver’s burden.

Assessing Abilities and Interests

TAP is an individualized, family-centric program that provides people with dementia activities tailored to their abilities and interests. TAP also includes training for both formal and informal caregivers on how to use activities as part of daily care routines.

“Engagement is an enduring need throughout the disease process, but there hasn’t been a protocol for using an activity-based approach before,” says Gitlin. “TAP is very oriented and focused on how we can improve engagement and meaningful activities at any stage of dementia.”

In randomized clinical trials, TAP improved quality of life for people with dementia by reducing behavioral symptoms, improving their engagement in activities, and providing caregivers with an effective tool. TAP can help with behavior issues, such as agitation, aggressiveness, irritability, restlessness and apathy.

Activities for Different Disease Stages

As dementia patients decline in mental abilities, they often experience challenges in cognitive function that increase negative reactions to their environment.

Many times, family caregivers overestimate or underestimate the capability of their loved ones with dementia. When this happens, they may prescribe activities or communicate in a way that falls below or above their loved ones’ abilities, which can lead to frustration and upset for both parties.

“It’s important to assess not just what the person can’t do but also what they can do, as well as their interests, and set up the environment to support that person,” Gitlin says.

TAP identifies patient interests and evaluates their abilities to perform activities tailored specifically for them. This provides a way for them to positively re-engage with their environment.

The program is delivered or supervised by occupational therapists and can be integrated into home care, or used as part of other caregiver support programs in care settings. The program involves three phases:

  • Identify the capabilities, physical functioning and previous and current interests of the person with dementia
  • Develop “activity prescriptions” for the person’s capabilities, an activity schedule and specifications for setting up and effectively engaging the person in the activity
  • Train caregivers to use these prescribed activities

The activities could be physical — such as balloon toss, chair aerobics or a walk with a companion — crafts or games, but they should be of interest to the person.

“We have a protocol to help determine what could be most meaningful to that person and how to set that up,” explains Gitlin. “We use the same approach regardless of the type of dementia for those who have challenges with executive function when interacting with their physical and social environment.”

Success Stories Using TAP

Gitlin gave an example of how TAP worked well for one woman with dementia who lives in a memory care facility. Because the woman was frequently agitated, it led to some disruption at the facility.

Through a TAP assessment of the woman, the caregivers discovered that she had worked in a laundry business before she developed dementia. Using that knowledge, the caregivers provide the woman with a basket of clean clothes or towels to fold when she becomes agitated. The prescribed activity calms her, puts her at ease and she seems happy.

Karyl Chase is the director of the Senior Companion Program funded by the Corporation of National Community Service in Ogden, Utah. Her agency first employed a version of the TAP program as a way to help their volunteer companions feel more comfortable visiting people with dementia. Once they were trained in the TAP practice, volunteers became more open to taking clients with dementia.

For example, before the training, one of the volunteers spent most of her visits with a dementia patient watching television, during which the patient would often doze off.

After an occupational therapist assessed the patients interests and abilities, the volunteer and patient began playing a dice game together. While this particular activity is not connected to anything the patient did in the past, it shows the value of engagement.

“The client lit up and became more engaged, especially when she won,” explains Chase. “The volunteer noticed how much more enjoyable the visits were for both of them. The client is more alert and active during the visit and their time together goes by fast.”

As the disease progresses, people living with dementia will require different kinds of support. Therefore, they should be reevaluated at each juncture to make sure they’re meaningfully engaged and that the activity fits their current mental status.

Dissemination of the Program

TAP continues to undergo trials in the U.S. and several other countries, including Australia, Brazil, Scotland and Chile. Some countries are further along than others in implementing it for dementia care for their particular health care systems.

Widespread dissemination of TAP throughout the U.S. remains a work in progress. While TAP merits further evaluation to establish efficacy with larger, more diverse populations, it shows a lot of promise as a nonpharmacological approach to manage behavioral symptoms, Gitlin says.

“Our mantra is that we can make life better for the person living with the disease and the family member caring for them,” she says.

By Melba Newsome

Melba Newsome is an award-winning freelance writer with feature credits in many prominent publications including the New York Times, Bloomberg Businessweek, Oprah, Playboy, Reader's Digest, Time, Good Housekeeping and Wired. Melba also is a frequent contributor to such online sites as NBCNews and Healthline.

Can the Mediterranean Diet Delay or Prevent Dementia?

July 9, 2019

In this 'Ask the Expert' column, a dietitian explains the possibilities
By The American Federation for Aging Research (AFAR)

Before earning her doctorate in public health nutrition from Queen’s University Belfast in 2012 and embarking on a research career there, registered dietitian Claire McEvoy spent a decade working in clinical nutrition for the National Health Service in Northern Ireland.

That experience, “supporting people to make appropriate and evidence-based dietary choices has completely influenced the type of research I do,” she says. McEvoy studies how different types of dietary habits in people affect their health and “healthspan,” which means the number of years of good health humans can enjoy toward the end of life.

“The Mediterranean diet may have a beneficial impact on cognitive health because it improves our vascular health.”

As a 2015 recipient of the American Federation for Aging Research’s Paul B. Beeson Emerging Leaders Career Development Award in Aging, McEvoy has focused her fellowship research on the Mediterranean diet and other healthy dietary habits.

She says she wants “to increase our knowledge on how diet contributes to cognitive health during aging, and to understand how best we can support dietary behavior change at different life stages to improve health and well-being. Ultimately, my goal is to identify effective dietary strategies to prevent and treat cognitive disorders during aging.”

McEvoy and other AFAR-supported researchers are driving discoveries that move us closer to extending healthspan.

In addition to regular columns by AFAR’s Scientific Director Steven N. Austad, AFAR is excited to share insights from the field of aging research through this “Ask the Expert” interview (previous interviews have addressed age-related dementia research, cancer research and the effects of younger blood on aging).

AFAR recently talked with McEvoy about the link between nutrition and cognitive decline, and the implications of her research for Alzheimer’s disease and other dementias, and healthy aging.

AFAR: What should people know about the link between diet and brain health, especially as it relates to the Mediterranean diet and healthy aging?

Claire McEvoy: It’s generally believed that what’s good for the heart is good for the brain, and that is why most research into diet and brain health to date has focused on the traditional Mediterranean diet.

It’s proven to be effective for reducing both primary and secondary cardiovascular disease and has also shown clinically significant benefits for several cardiovascular disease risk factors, such as cholesterol profiles, high blood pressure, fasting glucose level and inflammatory biomarkers, which are also risk factors for cognitive decline.

The traditional Mediterranean diet is plant-based, rich in fruit and vegetables, whole grains, legumes and moderate in fish and nuts. It also includes alcohol that tends to be consumed with meals. This diet is generally low in processed foods, sugary foods and red meat.

Observational evidence, while inconsistent, tends to support the Mediterranean diet for brain health as well as cardiovascular health.

However, the effects of this diet’s changes on cognitive function have been tested in few intervention studies. Preliminary results have shown improvement in cognitive function for people who are at high risk of developing cardiovascular disease.

Some research has focused on single nutrients, like vitamin E, or B vitamins. Very often, however, the evidence is mixed, likely because of differences in the types of populations studied and the diverse nature of vitamin supplements tested.

Some people with nutrient deficiencies may experience cognitive benefit from vitamin supplements. However, most people in the general population will derive greater health benefits from improving the quality of their regular diet rather than relying on vitamin supplements.

In two recent studies, you looked at how different types of dietary habits, including the Mediterranean diet, affect cognitive function in older adults and people in midlife. What are the most important takeaways so far?

We investigated the Mediterranean diet in the well-known Health and Retirement Study and the Coronary Artery Risk Development In Young Adults (CARDIA) study and found that greater adherence to the this way of eating was associated with better cognitive health in both older and younger adults.

In the most recent study conducted with Dr. Kristine Yaffe and other CARDIA investigators, the most important take-home message is that maintaining healthy dietary practices that align with the Mediterranean diet during young adulthood can help to preserve cognitive function even at midlife.

That is an important point. Because diet is likely to provide subtle, but cumulative, protective effects on brain health throughout a person’s lifetime that help to reduce the risk of, or at least slow down, cognitive decline as we get older, and potentially help to delay dementia in late life.

What are some of the key points research is revealing about the science behind the health benefits of the Mediterranean diet?

In our dietary analyses, we’ve found that individual foods on their own tend to have weaker associations with health outcomes compared with overall dietary habits. Therefore, while single foods and nutrients may be important, the combination of foods and nutrients within a person’s diet can act together to have greater biological effects.

In addition, we’re beginning to understand more about the mechanisms of how a healthy diet, such as the Mediterranean diet, affect brain health. These insights come from a range of studies in both animals and humans. The Mediterranean diet may have a beneficial impact on cognitive health because it improves our vascular health.

The Mediterranean diet and other high-quality diets also have antioxidant and anti-inflammatory effects that could protect against cognitive decline and dementia.

Your current research would seem to have larger implications regarding nutrition and healthy aging. Where do you think this might lead?

I am very much a public health researcher, so I want to help inform dietary recommendations that will benefit brain health throughout a person’s life to prevent or delay Alzheimer’s disease and dementia. The Mediterranean diet is clearly an important dietary pattern for overall healthy aging. But it should be emphasized that we don’t yet know the optimal combination of foods and nutrients for brain health.

One of the most interesting aspects of diet is that it has the potential to influence the development of several diseases, including obesity, diabetes, cardiovascular disease and some types of cancer.

Addressing poor-quality diets and diet-related disease in our population should be a major policy focus for healthy aging. While it is important to generate robust evidence of ‘what works,’ a key challenge going forward will be to find effective ways to promote and support healthy dietary habits in people for disease prevention and healthy aging.

By The American Federation for Aging Research (AFAR)

The American Federation for Aging Research is a national nonprofit organization whose mission is to support and advance healthy aging through biomedical research.@

5 Ways to Keep Your Brain Healthy

June 25, 2019

While there is no way of stopping someone from getting Alzheimer’s disease, there are many ways to keep your brain healthy to slow down cognitive decline!

  1. Get Active: Engage in regular exercise that elevates your heart rate and increases blood flow to the brain and body. Exercise helps to lower your blood pressure, reduces mental stress and helps to lower blood sugar, which can all help your brain!

  2. Eat Healthy: Eat a balanced diet that is lower in fat and higher in fruits and vegetables. People that eat a Mediterranean style diet that emphasizes fruits, vegetables, fish, nuts and plant sources of proteins are less likely to develop cognitive impairment and dementia.

  3. Get Enough Sleep: Not getting enough sleep due to conditions such as insomnia or sleep apnea may result in problems with memory and thinking.

  4. Challenge Your Mind with Puzzles and Games: Challenge and activate your mind. Building furniture, doing art, completing puzzles and playing strategic games challenge your mind and have long-term benefits for your brain.

  5. Pay Attention to Your Mental Health and Manage Your Emotions: Some studies show a link between histories of depression with an increase in cognitive decline. Seek medical treatment if you have any mental health concerns. Also, try to manage stress.

You can find all of these facts and tips on and

Take a Break

June 20, 2019

Are you a full-time caregiver for someone with Alzheimer’s or dementia? A little breather may be just what you need.

Alzheimer's disease is life-changing for both those who are diagnosed and those close to them. Having a helping hand when you need it is key to keeping yourself, and your loved one living with dementia, healthy and happy.

When you need a break, consider adult day services.Not only is it good for you, but it’s good for your loved one. Adult Day Services offer people living with Alzheimer's and other dementias the opportunity to be social and to participate in activities in a safe environment.

Adult Day Services may be for you if:

  • You are a full-time caregiver: Adult Day Services can provide a much needed break. While your loved one is at adult day, you'll have time to rest, run errands or finish other tasks.
  • You work during the day: Adult Day Services can help you to balance a job with caregiving duties.
  • You want a safe, caring environment for your loved one:  Adult Day Service is a chance for your loved one to share time with their peers. It provides a chance for them to be social and to participate in engaging activities such as music and exercise programs, as well as fun outings. 

Did you know that Woodside Place of Presbyterian SeniorCare Network offers Adult Day Services at its campuses in Oakmont (412-828-5600) and Manchester Commons (814-838-9191)? We are here to help!

Four Ways to Honor Alzheimer’s and Brain Awareness Month

June 19, 2019

Did you know that June is Alzheimer’s and Brain Awareness Month?

Here are 4 ways you can raise awareness for Alzheimer’s disease in the month of June.

  1. Wear Purple
    1. Purple is recognized as the official color of the Alzheimer’s movement.
    2. You can get some of your co-workers together and decorate the office in purple or gather group of your friends and wear purple to raise awareness and support people living with Alzheimer’s disease.
  2. Participate in “The Longest Day”
    1. What is “The Longest Day”? On June 21, which is summer solstice, people are encouraged to partake in an activity of their choice, whether it is painting or running a 5k and raise awareness of Alzheimer’s disease and support the Alzheimer’s Association.
  3. Start a Conversation
    1. Help to raise awareness for Alzheimer’s disease and the Alzheimer’s association by having a conversation with your friends, family and co-workers.
    2. Share with your friends and followers on social media about why you are going purple this month and make sure to use the hashtag, #endalz.
    3. The more people informed about Alzheimer’s disease, the better!
  4. Get Educated
    1. Reading about Alzheimer’s disease and learning new information will help you not only understand the disease, but it will be easier for you to communicate with others about it!
    2. There are many great resources available about Alzheimer’s disease and there is never too much information to be learned.

These facts were modeled off of “Alzheimer’s and Brain Awareness Month: How to Get Involved” on

Helping Those Who Forget…Remember

May 30, 2019

Midge watches cows being milked on a dairy farm.

Donna paints watercolor masterpieces with just one touch.

Frank belts out tunes on the karaoke machine.

All call the Woodside Neighborhood, a dementia-specific personal care community at the Presbyterian SeniorCare Network Washington campus, home. Each has a different interest that sparks special moments in their lives – many of these moments they do not recall on a daily basis.

With the help of It’s Never Too Late (iN2L), an interactive computer system that engages residents regardless of their cognitive level, the Woodside team is able to rekindle passions like painting, and bring back lost memories of the days on the farm.

Photo Caption: Donna, a resident in the Woodside Neighborhood, enjoys “painting” on the iN2L

iN2L doesn’t just impact one of our residents, it impacts all of them,” says Susan Lawrence, lifestyle engagement coordinator at Presbyterian SeniorCare Network. She reminisces, “I remember one of our residents who was a ‘War Bride’ from England. She moved to the U.S. and never got to go back home. We received this information from her family and pulled up the Earth view of the town on iN2L. She couldn’t remember the name of her hometown, but when she saw the local Post Office, she leaned in to get closer to the screen. We watched her eyes light up in a moment of recognition and she began sharing stories about her father and her time ‘at home.’ Talk about an impactful moment of remembrance – and all because of the iN2L.”

iN2L provides an element of engagement that you can’t get from anywhere else.

“We have fun with the iN2L. But what’s most important is that we engage. They remember; even if it is just for one moment,” says Susan.

The Power of Music

May 22, 2019

May is Older Americans Month! Communities that encourage the contributions of older adults are stronger! By engaging and supporting all community members, we recognize that older adults play a key role in the vitality of our neighborhoods, networks, and lives.

This year’s theme, Connect, Create, Contribute, encourages older adults and their communities to: 

  • Connect with friends, family, and services that support participation.
  • Create by engaging in activities that promote learning, health, and personal enrichment.
  • Contribute time, talent, and life experience to benefit others.

One awesome example of how we "connect" with our residents, is through the use of an iPod Shuffle. It is said that "music holds a special place in the heart and mind that time can’t erase, even when almost everything else is gone." We believe this, which is why we utilize the Music and Memory Program.

Music Enhances the Lives of Individuals Living with Dementia

Gina Iuliucci, MT-BC, CDP, lifestyle engagement coordinator at the Presbyterian SeniorCare Network Washington campus loves music. In fact, she is a music therapist and shares her love of music with our residents living with dementia to enhance their lives with their favorite tunes.

“We utilize Music and Memory, a non-profit organization that provides personalized digital music to older adults,” says Gina. She, as well as 20 certified team members on our Washington campus, use music technology to comfort our residents living with dementia at times when they could benefit from this type of engagement.  

“We have a resident who has aphasia. It is heartbreaking to watch the emotions on her face as she tries to verbalize what she is feeling. To help relieve some of her nervousness, we’ve used Music and Memory; once she begins listening, her anxiety melts away. She is often more relaxed long after the music stops playing,” says Gina.

Music and Memory Executive Director, Dan Cohen founded Music and Memory with a simple idea: if he needed nursing care, he wanted to be able to listen to his favorite ‘60s music. With the popularity of iPods, he brought music into nursing communities. Music and Memory also offers certification for organizations to incorporate therapeutic music as a standard of care; Presbyterian SeniorCare Network is a certified organization.

iPods are provided through Music and Memory, as well as through donations from community members. “Our iPods are programmed to include personalized playlists for each of our residents,” says Gina. To get an idea of the music preferences of each resident, Gina and team will inquire with family members, as well as residents. “Often, a resident may not remember the name of an artist, but can tell you if they like country or big band music. That helps us to narrow the genre and program a list that includes their preferred music,” says Gina.  

Music and Memory is offered in the dementia care communities around our Network. Through the program, we are able to give pleasure to persons living with advanced dementia, reduce frustration and late-day confusion, as well as offer an alternative or a reduction to the use of anti-psychotic medications.

When asked if she sees a benefit to Music and Memory, Gina instantly answers, “yes!” “It is an honor to be able to provide personalized music to our residents. When a resident is feeling anxious, as soon as the headphones are placed on their ears, you can see a change in their demeanor. When they are happy, I am happy. It gives me the chills to know that music has made their worries melt away.”

To learn more about the living and care options around Presbyterian SeniorCare Network, visit 

Pictured above, Aggie, enjoying the Music and Memory Program.

Sue Mazur, Aggie’s daughter, says "The special songs from Aggie's past make an immediate connection and allow my mom to connect with family and friends in a way that she wouldn't be able to otherwise." Aggie is a resident in the Woodside Neighborhood at Southminster Place of Presbyterian SeniorCare Network. The Woodside Neighborhood specializes in dementia-specific personal care. 

Dementia Care Reimagined: A Q&A With Dr. Tia Powell

May 21, 2019

The author calls for more research on developing compassionate care model
By Edie Grossfield

As so many medical professionals, policymakers and nonprofits continue to sound the alarm about the impending tsunami of Americans with Alzheimer’s disease and other dementias, the U.S. still has no affordable long-term care system to handle the situation.

In her new book Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, Dr. Tia Powell joins those sounding the alarm, but she calls for a much greater focus on developing care programs and facilities for people with dementia that preserve their dignity and ability to experience joy in life.

The professor of psychiatry and bioethics at the Albert Einstein College of Medicine in New York says it’s time to stop focusing only on finding a cure for dementia, as if that will save us from having to pay for care. It’s too late for that, she says. No magic pill or other preventative intervention is anywhere on the horizon that would be available in time to make a difference for the 10,000 boomers turning 65 every day.

Powell’s book, released this month, blends a fascinating history of how dementia has been viewed in the U.S. with her thoughts on what compassionate care for people with dementia might look like. She also includes her own experience helping to care for her mother who had dementia and died a few years ago.

In a recent interview with Next Avenue, Powell talked about what she learned from researching and writing her book:

Edie Grossfield: You wrote that you expect some people will take issue with your suggestion that we need to shift more research funding from finding a cure for dementia to developing compassionate care for people with the disease. Can you elaborate?

Dr. Tia Powell: I don’t want people to stop looking for a cure. Dementia is a serious illness, it is a fatal illness and we don’t have a cure, so I’m all for finding a cure. But that has been the overwhelming majority of the research we’ve done.

If we find a cure, it’s not going to be in time for the baby boomer generation. We will have millions and millions of people who need care. And although I think there are good people working on that, there has been pretty modest funding for thinking about what would good care look like? How can we pay for that? How can we make it accessible to people all across the country? What are the things that people with dementia and their caregivers really say they need and want?

You also expressed concern about some researchers and pharmaceutical companies focused on a preventative drug for people who have high levels of amyloid plaque in their brains — that being one theory about the cause of Alzheimer’s. You said that since research has shown high levels of amyloid doesn’t mean a person will get Alzheimer’s, such a drug would mean big bucks for ‘Big Pharma’ with little benefit for most of the people who take it. What are your thoughts on this research today?

I hope that particular dream is fading. We just had in the last couple of weeks another major failure of a big, hundreds-of-millions-of-dollars clinical trial trying to decrease amyloid as a way of preventing and treating dementia, and it failed again, just like the ones I’ve described in the book. I’m hoping it’s going to be the nail in the coffin for looking just at amyloid. It’s not that amyloid is good for you, but there’s something really important that we don’t understand, and it really looks like just decreasing amyloid or even preventing its buildup — I don’t think that’s going to be the ticket.

What are your hopes for developing care for people with Alzheimer’s and other dementias?

A lot of people who don’t even have dementia yet are absolutely terrified. They think that this is more frightening than cancer, than AIDS. And that’s partly because we haven’t done enough to reassure them. I think we can reassure people. I think you can have a life with dementia that has joy in it, and we need to make sure that’s not an empty promise, but an actual one. I think it can be. And since a lot of us are going to have dementia, and probably me, too … I think we should do more to make sure that people with dementia don’t have to be so terrified of it.

What is one example of the kind of care you hope we’ll see more of?

A lot of older buildings that are nursing homes had no easy access to the outdoors. In some cases, people might go literally years without ever feeling the outside air. And now, there are places that think we can do better than that. They’ve said even if somebody is in a wheelchair, why don’t we get one that they can operate by themselves? Why don’t we set up our facility so that the access is easy so the person can just present themselves at the door, the door will open automatically and they will be in, basically, a kind of walled garden? They can walk or roll about as much as they want, and end up back at the door. You can’t get lost. So, it’s that simple freedom that can make an enormous difference in somebody’s life.

Toward the end of the book, you wrote that you think you have a good chance of getting dementia when you’re older because both your mother and grandmother had it. Is that one of the reasons why you wanted to write the book?

The book is, in a sense, an enormous thought experiment for me to figure out: Can I make my peace with that? And if I’m going to have dementia, I’d like to have some joy in that life. I would like to be happy, because that’s really the point of life. So, I better think about how to be happy with dementia — and what would that look like and how would I do that.

What was it like for you to do that exercise?

I think it was very useful. It was very comforting to try and think about that. So, I thought that I would offer it as a suggestion (to readers of the book) because, as we know, a lot of people in middle age and up are really worried about ‘Oh man, what if I get dementia? It’s just the most horrible thing in the world.’

I’d like to at least tease them with the idea that maybe it doesn’t have to be so horrible. What could you think about, what could you bring with you into the stage of dementia that might make you happy? How could you remodel the world around you? So, if you wish there was a community garden where little kids come and plant bulbs, it may be great for older people with dementia to maybe sit and watch the little kids putting in the bulbs. Maybe you could work on that. It would be a great thing to do.

Hope for Simple Joy

In the last paragraph of her book, Powell described what she hopes she could still enjoy as a person with dementia.

She wrote: Even toward the end, I hope still to have some joy. I may not get there, but I’d like to see again one of my familiar places: the dancing world of Central Park on a perfect day. Leaves shimmer overhead in a light breeze. Midair Frisbees fly while dogs and people arc gracefully up to seize them for the ether. On the ground, a young couple on a picnic blanket, Motown on their boombox. Their wobbly first child stands, resplendent in a dinosaur-print onesie, his small hands in the large ones of his seated father. He cannot walk yet, but he dances, bobbing his padded bottom up and down. His face is the portrait of happiness, with the sun, his parents’ love, the breeze, the music all radiating through him. If I could be there again, trees, breeze, flying dogs and dancing babies, that would be enough. I’ll be seeing you.

The last paragraph of your book is beautiful, but also sad, as you talk about what you hope to be able to still enjoy if you have dementia.

It is a little sad, but it’s also about gratitude and feeling happy for the things that you have loved in life, and really hoping to find at least some of those things that you can still be happy about as you go forward and step into the future. What could you take with you that would still be a happy thing?

By Edie Grossfield

Edie has been a journalist for more than 20 years, reporting and editing for newspapers and magazines. She also worked in communications for a large health care organization. She holds a bachelor’s degree in communications and media and a master’s degree in journalism, both from the University of Wisconsin in Madison. Reach her by email at

Should All People 65+ Get Cognitive Assessments?

May 20, 2019

Experts agree it's crucial for early detection of dementia, but some have concerns
By Edie Grossfield

A special section in the recently released Alzheimer’s Association’s 2019 Alzheimer’s Disease Facts and Figures report focuses on the role primary care physicians can play in early detection of the disease. The association says all people 65 and older should receive some kind of assessment of their thinking and memory functions and that the primary care setting is the best place to do it. It should be a part of routine exams, said Joanne Pike, the association’s chief program officer.

“We hope the report will encourage seniors and physicians both to be more proactive in discussing cognitive health during the Medicare Annual Wellness Visit and other routine exams,” she said in the press release about the new report.

According to the report’s survey of 1,954 health care consumers age 65 and older, only half have received a cognitive assessment, and even fewer receive routine cognitive assessments.

Experts say early detection of mild cognitive impairment, which can lead to dementia and Alzheimer’s disease, is important in terms of treatment and other factors. But some see problems with assessing all people who are asymptomatic — that is, showing no signs of impairment and not complaining of thinking and memory problems.

The main concern is the lack of information regarding the accuracy of the tools commonly used to detect cognitive impairment. Those are structured tests such as the “Mini-Cog,” the “Mini-Mental State Examination” and the “General Practitioner Assessment of Cognition,” or GPCOG.

The Alzheimer’s Association’s survey of 1,000 primary care physicians found that nine out of 10 sometimes use one or more of these types of tests, along with their own observations, during office visits. If some indication of impairment is found, most of these doctors refer their patients to a specialist, according to the survey.

Concerns About ‘Mini’ Cognitive Assessments

Dr. Terry Quinn, a geriatrician, researcher at the University of Glasgow and editor with the Cochrane Dementia and Cognitive Improvement Group, has written and been involved in articles investigating the accuracy of several brief cognitive assessments. Quinn is concerned about cognitive screening for all asymptomatic people 65 and older, not only because there’s lack of evidence to show the tests are accurate, but because there’s lack of information about the emotional and practical impacts they can have on people when the tests miss problems or falsely find problems.

“For example, we don’t know whether asymptomatic older adults want screening, we don’t know the effects of an erroneous label of cognitive impairment, we don’t know if screening tests predict future cognitive change, we don’t know the health economics of screening, we don’t even know what to do with a positive screening result,” Quinn says. “There are many examples of screening tests that do more harm than good. I am not against cognitive screening per se, but I would, at least, like to see small-scale pilots before we introduce it at scale.”

One of the most commonly used brief cognitive assessments is the Mini-Cog, a three-minute test in which the patient is asked to remember three words, then draw a clock with the hands set to a certain time. After the patient completes the clock, he or she is asked to recall the three words given at the beginning of the test.

A Cochrane review of studies measuring the accuracy of the Mini-Cog to detect dementia stated that the highest-quality study found the Mini-Cog “failed to detect up to 24 percent of individuals who have dementia,” according to Cochrane. In addition, the same study found that “up to 27 percent of individuals may be incorrectly identified as having dementia.”

Most of the primary care physicians surveyed by the Alzheimer’s Association (94 percent) said it’s important to screen all people 65 and older for cognitive impairment, and 82 percent of the consumers surveyed said it’s important to have their thinking and memory functions checked.

However, the report also found a significant minority of consumer respondents who are concerned about assessment and testing. About one-third believe the tests are unreliable, and 24 percent agreed that “the idea of all seniors being tested for thinking or memory problems is insulting,” according to the report. Also, 19 percent believe that since there’s no cure or treatment for thinking or memory problems, “why bother testing for them.”

‘Is Something Better Than Nothing?’

Neurologist Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, Minn., agrees that there are significant problems with brief cognitive tests, like the Mini-Cog, but still believes regular cognitive assessments should begin at age 65.

“I’m a neurologist, so I’m a specialist, and I sometimes cringe at those very, very coarse assessments of a complicated operation — namely cognitive function,” Petersen says. “But on the other hand, is something better than nothing?”

He says there’s plenty of debate about which brief assessments are better than others, “and studies show that ones that are a little more detailed and take a little longer to do, in fact, give you more information about the future outcome.”

But even at the simplest level, Petersen says, some kind of discussion of thinking and memory should happen during an annual physical exam for people 65 and older because early detection is important. So is having a baseline from which to compare future assessments, he adds.

“It could even be, ‘I asked Bill how his memory was and he said it was OK,’ and put that in the medical record. As incomplete as that might be, at least it shows that some attention has been paid to that issue. And I think that’s an important first step,” Petersen says.

The Alzheimer’s Association website lists these advantages to early detection of dementia:

  • Treatment that can lessen symptoms, such as memory loss and confusion, for a limited time
  • Opportunities to participate in clinical trials
  • A chance to prioritize other health issues, such as high blood pressure, smoking and fitness, which can help preserve cognitive function
  • Receiving emotional and social support as soon as possible
  • Planning for the future, including finances and care services

Petersen recommends that people 65 and older bring up the topic of cognitive function with their doctors. Not only can it lead to early detection of possible problems, he says, but peace of mind for those patients. He says studies by AARP and other organizations have found that Alzheimer’s disease is what most scares older people when it comes to medical issues.

“They’ve done surveys asking people, ‘What are you most concerned about?’ and you’d think [things like] heart disease or cancer, but it’s Alzheimer’s disease,” Petersen says. “They’re most concerned about losing their cognitive function, interactions with their family, losing their memory and things like that. So, if that’s the case, shouldn’t we at least open the door on this issue rather than waiting until something develops?”

By Edie Grossfield

Edie has been a journalist for more than 20 years, reporting and editing for newspapers and magazines. She also worked in communications for a large health care organization. She holds a bachelor’s degree in communications and media and a master’s degree in journalism, both from the University of Wisconsin in Madison. Reach her by email at


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