For Families of Those Living with Dementia — How to encourage, engage, interact

By Megan Hannan

In this time of crisis, we all find ourselves needing comfort a little more than usual.  Most of us have enough control over our lives that with a little effort we can create these moments of comfort, whether it’s attending a yoga class via video chat, having a phone conversation with our daughter, or even just sipping a quiet cup of coffee on the front porch to start our day.  Our loved ones living in long-term care may not have the same means to find comfort.  Those living with dementia have an even greater struggle, as they may not even be able to recognize their increased need, let alone identify a source of comfort and then work to attain it.  In short, they lack the ability to self-comfort as we can.

How can we help, especially when we are physically separated from them? Talking over the phone or at a window can provide connection and reassurance, but these brief interactions cannot fill a day.

However, with careful forethought we can make those moments meaningful in ways that will continue bringing comfort for the person well after our conversation is over.

Following are tips for how to connect with your loved one to support their need for love, comfort, personal identity, purpose in life (occupation), inclusion, and personal connections with people and things (attachment) – the basic needs in life that we all share, according to dementia research pioneer, Thomas Kitwood.

Connect in ways that reinforce identity

  • Does your loved one enjoy music? Often people living with dementia can recognize a song or instrumental, and even remember words and melody. You could sing over the phone together and bellow out your old favorites!  

Or, send a recording of music or a link to an opera or jazz performance to play on an iPad or smart TV.  When my mother was living, she listened over and over to a recording of my son singing opera. It was her grandchild, so it didn’t matter if it was of bad quality or that she couldn’t see him really well – she knew him, and she loved opera!

  • Do you have photos or artwork at your home that belong or relate to your loved one? Consider compiling a small packet of photos or mementos to help the person reminisce – and be overjoyed to receive a gift! But first, check with the care home to ensure they allow items to be delivered during the pandemic.

Provide meaningful occupation with activity boxes and packets

Send items your loved one can rummage through or assemble when they are alone or interacting with you on the telephone or social media. Try to include things related to the sights, sounds, smells and tactile senses of their long-term memory. You might include:

  •    Greeting cards. Ask the person to pick out 10 of their favorites.  
  • Something that involves writing, an embedded skill that people with dementia often retain. You might send blank greeting cards on which your loved one can write thank-you notes or other messages to their caregivers.
  • Send several skeins of yarn and ask their help winding them into balls.
  • Write several letters or cards to the person, place each in a separate envelope and send them together in one big package. It will be fun for them to receive a package and find several things inside to open and read.
  • Keep a look out for funny or interesting photos that you might print in large format and send in a packet. Or, take photos of artwork, animals, and children and include them.
  • Create a nice, framed picture of a favorite prayer, poem, or quote to send to the person and when you call, read it together.
  • Send a letter each day if you can. Just a nice card with a couple of words works wonders for a moment and can always be re-visited.

Make it purposeful

Think of activities you can provide and conversations you can have with your loved one that reinforce their feelings of self-worth and purpose in life. Their purpose could be:

  • Familial: The entire family wants to connect with you – we can hardly wait until this is over and we can have a picnic!  
  • Religious: Please promise me you’ll pray for John, Dad. He’s still working in the grocery store and it’s so important – he is a hero –but he needs our prayers. 
  • Hobbies: I know you said you didn’t want to sew anymore, but would you be interested in cutting some of the pieces for these masks I’m making?
  • Relationships: Mom, remember your old neighbor Jean? She’s feeling awfully lonely and I know she’d love to hear a friendly voice.  I always enjoyed those stories about the trouble you two got into together as kids, maybe you could call her just to reminisce a bit?”

Or, ask your loved one to make a list of things that bring her joy and think of how we can make those things happen again.

Use phone, FaceTime, and Zoom to reinforce feelings of inclusion, personal connections, love

  • Read aloud religious and spiritual passages, poems, and jokes.
  • Make lists together – e.g., all the places you have visited, family members as far back as we can remember, spring flowers, books we’ve read.
  • Think of what comforts or humors the person. Give simple reassurances: You are in a safe place and are helping others be safe by staying in your room.
  • Ask not how she is doing, but how do you feel right now, Mom? And LISTEN – even if the person’s language is unclear, listen for emotions. Agree and say, I see, I understand how you feel.
  • Share all that you are doing even though it may not seem like much: I’m cooking, reading, writing letters, working on the computer, calling and talking with other family members, weeding the garden for the first time in years (Ok, that’s what I’m doing.)
  • Recall and reminisce about things you both love, like recipes, sports teams, or your children as babies.
  • Don’t forget to say, I love you.

And remember – do ONE of these things on a call and save something else for another call.

Collaborate with staff

Do your loved one’s caregivers have suggestions? Is there a time of day that is harder than others? Can you do something to help at that time? What have they had success with to help the person calm down, relax, laugh, get distracted, and feel useful?

Finally, take care of yourself. People living with dementia may not understand about the pandemic, but they can sense when those around them are feeling anxious and upset. We can help bring them comfort only when we, ourselves, are comfortable. So, enjoy your daily pleasures and together we can get through this.

Conversations with Carmen webinar host still going strong after 10 years: ‘Culture Change is still the answer.’

Light the candles, it’s the 10thanniversary of Conversations with Carmen, the monthly culture change webinar hosted since 2009 by
Carmen Bowman, MHS, BSW, 
for Action Pact!

After 100 or so interviews over the past decade with some of the top innovators of culture transformation, “I’ve learned so much,” says Bowman.


On the third Friday of every month except December, she highlights one of a wide range of topics – e.g., integrating pets and children, involving elders in community volunteering, getting residents up and out of their wheelchairs, using Validation to communicate with those living with dementia, enhancing residents’ dining experience, complying with the latest CMS directives while maintaining normal life, and more.

“It’s reinforced my thinking,” she adds. “Culture change is still the answer… you will save money, make money, (and have) better compliance, satisfaction, recruitment, and (staff) retention.”

Bowman’s own wealth of experience as an activities director, state surveyor, trainer, author, and advocate brings a unique perspective to the conversations. It all started in college while she was volunteering as a social work student in a nursing home.

“I actually fed residents – this was back when a volunteer could do that without training – and I fell in love,” says Bowman. “I realized that a person could make a beautiful moment for people even while they’re eating… I discovered the power of dignity, how to talk with people and not at people, how to cover for embarrassment, and how to offer choice in every interaction. It came naturally.”

After college, Carmen was working as an activity director when she learned about Dr. Bill Thomas and the Eden Alternative. She read his book, Life Worth Living, and was immediately hooked, she says.  She began to develop the concept of “meaningful engagement” with residents to replace “activities” in her daily work, all while working on her Master’s Degree in Healthcare Systems. This would have been more than enough for most people, but Carmen went a step further and applied for a position as state surveyor in Colorado. Her hiring made her the nation’s first certified activities professional to become a state surveyor.

“Colorado should be commended because they had a well-rounded team that also included pharmacists, dietitians, social workers, and therapists at a time when many states hired only nurses as surveyors,” she says.

Bowman was a surveyor for nine years and then became a CMS policy analyst, helping to train other surveyors and develop new CMS interpretive guidance for activity professionals. Later as a contractor for CMS she co-developed the Artifacts of Culture Change measurement tool, authored background papers, and facilitated the two national Creating Home symposiums, co-sponsored by CMS and the Pioneer Network.  A third symposium focusing on Quality of Life is just starting to be talked about, she says.

Carmen co-founded the Colorado Culture Change Coalition, worked with the Pioneer Network to develop numerous educational resources, authored eight books with Action Pact relating to culture change, and founded her own consulting firm, Edu-Catering: Catering Education for Compliance and Culture Change.

In 2009, Action Pact Executive Leader, LaVrene Norton, invited Bowman to host a monthly webinar.

“What a blessing that she asked me, of all people,” says Bowman.  “Thank you, LaVrene!”

In choosing discussion topics for the webinar, Bowman keeps her finger on the pulse of culture change nationally and monitors news from organizations like Action Pact, the Eden Alternative, and the Pioneer Network. Sometimes there is an ongoing or developing issue that she wants to call attention to.

One unfortunate trend right now, she says, is “fake life” experiences, like giving elders robotic dogs or plastic babies to hold rather than real ones. “Why do we think a doll is what an adult needs?” she asks.  “I’m truly puzzled by it.”

Instead, let’s all work on getting real babies into long-term care environments, she urges. “Babies and children need the love of elders, and elders need the love and touch of babies and young children … Let’s be creative and do this together, it can’t be just the activity director.”

Though inspired by her webinar guests, she is disheartened by the overall slow pace of change which she fears is actually beginning to slide backwards.

“All too often, an organization’s culture change leader retires and a new one comes in and lets things stagnate, or in some cases reverses a lot of what the predecessor did,” she explains. Or, a new company takes over and reverts to the old, institutional way because it’s familiar and “easier to manage.”

What they don’t understand is that the hard work of culture change is the easiest way in the long run, she says.

“Let’s say you actually learn how a person likes to live their life … and then we serve her the way she likes. It ends up being more efficient … what we think is harder is way more efficient and creates a better life for the person as well as work life for the caregiver,” she says. “Individualized care and resident-directed life is what we are supposed to offer, what everyone wants, and what now sets a community apart. Wouldn’t it be something if a changed culture was actually the common practice? That’s the goal, we can’t give up and if a monthly conversational webinar about relevant topics can help, I’m proud to be a part of that.”

Action Pact In The News

Action Pact Receives BAM Award of Excellence

Recently the Kansas Department of Commerce named 23 Regional Business Excellence Award winners and 52 Merit Award winners as part of Business Appreciation Month, the Department’s annual celebration of Kansas businesses and their contributions to their communities and the state economy.  Among the 23 Business Excellence award-winners is Action Pact, based in Manhattan, KS.Award icon-orange

Award qualifications include:

  • Business expansion in Kansas
  • Successful employee retention and recruitment practices
  • Employee training/educational programs
  • Capital investment in Kansas
  • Support of local activities including school activities, community events, economic development and leadership programs

Read all about it.

Action Pact CEO Steve Shields Speaks in Ireland

Ireland_trad_counties_namedThe Irish Council for Social Housing invited Steve Shields to present at the ICSH BIENNIAL NATIONAL SOCIAL HOUSING CONFERENCE:  Turning the Tide for Social Housing, which took place this week (Sept. 16-17) in Co Offaly.  The topics he addressed were:

  • The need for a national debate in Ireland on how to offer greater choices and flexibility to older people who require housing and care / supports as they age.
  • At the moment many older people simply move out of their home into nursing home care when they require a little support.
  • How individual Departments, e.g. health, environment as well as local groups must come together to create safe, secure communities  for older people. Policy making comes mainly from silos in Ireland now!
  • There is an existing infrastructure of housing associations who provide housing and supports to older people in Ireland – funders and policy makers need to look at how best to further develop, utilise and fund this resource as well as replicating it, as it embodies much of what the Action Pact household model is based on.
  • Changing demographic trends (of an ageing population) means planning should be occurring now. Now is the time to look at developing appropriate housing options for older people which incorporate the following:

~ Community support – to ensure that the scheme is an integral part of the life of the local community and that residents of the scheme are given the opportunity to be involved in meaningful activities.

~ Appropriate Care supports – allocated to the scheme allowing for the changing needs as people age and to assist people to remain at home for as long as possible.

~ Age Friendly design – that is attractive, affordable and which addresses older persons needs.

~ Appropriate location – Close to those services that are most required as we age (post office, shops, health care services etc.).

Was it the Lure of Vegemite? 

Megan Hannan found herself in Australia for much of the summer (well, it was summer here) — working with our wonderful friends at Uniting and many of their 70 sites that are committed to moving to households.   First step:  Embracing Action Pact’s approach and philosophy of PersonFirst®.  She’s back in the U.S. now, but will boomerang back with LaVrene come November. These folks are serious in their commitment to culture change and to households!  (See the “Back to School” post for some of their stories)

Shaking up the Status Quo

Next Avenue, public media’s first and only national service for America’s booming 50+ population*, has begun a year-long project on aging well, planning for the changes that aging brings and shaping how society thinks about aging. The most recent article – A New Twist on Planned Senior Communities, by Beth Baker, describes four communities that focus on wellness and quality of life. Not just about old people-croppedHer first featured community is Healthy Living Community, a town-within-a-town in Liberty, MO, that will focus on wellness and intergenerational living. Leading the development is Steve Shields, a pioneer in transformative eldercare and CEO of Action Pact. The community springs from a collaboration between Action Pact and Liberty Hospital and Healthy Living Centers of America. In this community, town life will center around a “Healthy Living Center” complex that includes 6,500 square feet of: state-of-the-art exercise space, a yoga studio, a spinning room and four swimming pools as well as a restaurant, bistro, theater and childcare center – all open to the broader Liberty community. Baker emphasizes thatAbout all-cropped a core element of this community will be households, rather than traditional assisted living or nursing homes — for those who need long-term care services. As the community continues to develop, there will be a variety of housing types. The first phase will open in 2017. Read the full article here.

Beth Baker, a long-time freelance writer whose work has appeared in the Washington Post, AARP Bulletin, Washingtonian, and Ms. Magazine, is the features editor of BioScience, the journal of the American Institute of Biological Sciences. Ms. Baker is also the author of Old Age in a New Age: The Promise of Transformative Nursing Homes and With a Little Help from Our Friends, Creating Community as We Grow Older — both available from Action Pact’s webstore.

Of further interest:  Action Pact recently offered webinars on both the Healthy Living Community, with Steve Shields as guest and With a Little Help from Our Friends, Creating Community as We Grow Older featuring Beth Baker as the guest.  If you would like to watch these shows, they are also available in the webstore.

Twin Cities Public Television (tpt) in St. Paul, Minn. produces Next Avenue for the PBS system and 84 PBS stations are local affiliate partners.

WHAT HAPPENED THIS SUMMER? We Found Encouraging News From Around the Globe — Culture change: It works!

Remember the good old days when your teacher asked you what you did on your summer vacation? Well, the summer report is back! From near and far there is good news for the culture change movement.  Here are a few short stories to inspire you.


An email shared with us by The Hermitage in Richmond, VA

Subject: The coffee offer

Hi, Sue,

I just wanted to thank you again for letting us know that you “bribed” Mom to a social evCoffee Offerent with the promise of coffee. 🙂  While I know that she enjoyed the beverage, I can promise you, even more –knowing that you remembered her favorite and made a point of offering it with a dose of humor meant the world to her.  As you know, when one has lost so much over the years, being treated as a special person means everything. 🙂

Price of coffee:     < $1

The entire coffee “experience” with a smile:  Priceless!

That says it all!


This story shared with us by Karmen Payne from Fair Haven in Birmingham, Alabama

Elderly walking1

I want to share a story with you all. I asked the associates in our dementia care unit to discuss an afternoon walking club for after dinner. The associates gathered a banner, pom-poms and a group of residents with severe dementia who can still walk. As they walked, they all waved and other residents waved back to them. Some even joined the walkers. Now, nightly, as this occurs the residents smile and interact like neighbors should. A staff person shared with tears in her eyes, “this is how I dreamed it could be.” Just small steps in a big circle of change.

You can try this at home — your home!


It’s already widely understood that pets enhance the daily lives of a great many residents in care communities. When we think of pets, we often think of dogs, cats, hamsters, perhaps birds, right? But in Australia, it can be a different story….

In their rural setting, the residents of Wontama take great pleasure in animals that are closer to home, as many of them have some connection to the bush and no longer have access to the animals that they did in their earlier lives. Joey love Recently they were visited by a joey (baby kangaroo), and the residents “lit up” when they either saw or held this little kangaroo. What a lovely warm feeling it gave everyone involved.

You can see why! Clearly adorable.

Shared with us by Helen Mobbs of UnitingCare’s Wontama Village Home in Orange, NSW, Australia


This story comes to us from WindsorMeade in Williamsburg, VA

During a recent Steering Team meeting, WindsorMeade celebrated many accomplishments in their move toward Culture Change.  In an effort to highlight those accomplishments, Steering Team members were given a T-shirt with their new logo and tagline on the front, “Embracing Life at Home.”  The sunbeam graphic is a salute to the book, In Pursuit of the Sunbeam, and the tagline embodies the team’s sentiments in a short phrase. The back of the shirt has a double intent: it defines their location and also their commitment to make Embracing Life at Home the “way” they do things each and every day. Each WindsorMeade team member will receive a shirt.

WindsorMeade Tees

Thank you, WindsorMeade, for the lovely tribute.  We are rooting for you all the way as you pursue the life at home that you envision!

In Pursuit of the Sunbeam was co-authored by Steve Shields and LaVrene Norton, and is available in the Action Pact webstore.


This story comes from Susan Robertson at The Hermitage-Roanoke in Roanoke, VA

One day at Kroger, Susan noticed they were giving away bouquets of fresh flowers to their customers. The Hermitage had been looking for a source to purchase fresh flowers for their dining room tables for some time, but had not been able to find one. With that in mind, she asked the store manager if they would be interested in donating fresh flowers that are not sellable to a non-profit long-term-care retirement community. Lo and behold… Kroger, said yes!

Hermitage FloristEver since then, on an almost weekly basis, Kroger has been donating fresh flowers to Hermitage in Roanoke. One of the residents loves flower arranging and has been faithfully decorating her community with fresh flowers almost daily. Now she has organized a group of residents to assist her with this project. One day Kroger donated over a dozen bunches of flowers of all types … roses of all colors, mums, etc. This came in handy, as they were getting ready for an anniversary celebration the next day. Here is picture of the “florist” and some of her beautiful flower arrangements enjoyed by all.


From Renee England and the people of Annesley House, UnitingCare, in Leichhardt, NSW, Australia

Annesley House has been looking at current design plans and major refurbishments. In light of that, Renee decided to meet with the residents to ask what Home means to them. These are people with mental health issues and many have been chronically homeless for most of their lives, so what kind of answers would she get? The session was amazing, she reported – very interactive and truly inspiring. So much so that she wishes she’d filmed it.Home means

The notes say it all. Sheets from the session are shown here.

Culture Change – An Inside Job!

The following heart-felt piece illustrates what often happens to folks during their time at one of Action Pact’s intensive educational offerings.  Karmen Payne, of Fair Haven Retirement Community in Birmingham, AL, recently attended the Nurse Leader intensive, and a fire was lit.  These are her thoughts as she headed home.

The journey to understanding household models is more than learning a management style or philosophy to me. The vision is unique, individualized and as alive as the people living and working in the households. The characteristic “schedules” of the nursing home are absent and the resident is the driver of the pace, style and atmosphere in the home. The critical attitudes, noise and tension are gone. The hierarchy of departments melts away. Rather than entering a “hall,” households truly seem to offer residents, families, staff members and visitors like me, a piece of their home for a time.

At first, I expected to attend a nurse leadership intensive and get a “how to” experience. I had my pen, paper and standard three ring binder at the ready. I quickly put most of that away in favor of walking the hallways, sitting at tables and engaging with members of households to discover what made their household tick. The atmosphere was so shockingly different from my own experiences. The quiet, peaceful interactions were personal and calm. There was no running about by anyone. The residents of each house I visited seemed to come and go at leisure. Everyone was joyful and attentive from the nursing assistants to the licensed dietician serving at the grill. Even the families I encountered were happy!

Returning to the classroom for reflection and discussion, I discovered I was not alone in my shock. There were others on the same journey as my building. That is a trek to finding our pathway to creating home for our residents — the way the residents want home to be. However, rather than a “ten-step plan to compliance and home,” I discovered a guide to self-examination that challenged me to change. If we are to become a household, I was going to have to think differently, respond differently and lead differently. Ten steps were not going to fix the problem on the “floor.” No. The changes I needed were an inside job that would become contagious as we build homes, teams and families to care for our residents’ needs as our residents desire us to.

So,Heart inside person I am beginning the journey with a change of heart and a renewal of spirit. I want to serve my residents and my team by honoring them, empowering them and getting out of their way while motivating them to do what only they can do. Create home. Pursue life. Honor the spirit of each individual in each household in their own unique way. I realize the standard I have lived by for the last 20 years is going to change. I am not the decision maker. Every water pitcher won’t be sanitized on Tuesday any more. Yet, every resident will be honored, fulfilled and respected every single day. I am losing nothing and they gain everything, especially their right to pursue life in their later years on their own terms.

This change will not come without pain. There will be less gossip and more accountability. Confrontation and discussion will replace accusation and blame in our lives. I will have to be brave and bold. Trust will grow as a foundation and control will crumble under its weight. Character and principle will replace compliance and enforcement. Our number will shrink to only those with a heart to serve at first. However, in the end we will become a stable team of servant-leaders dedicated to our calling.

Each home will be different. Each schedule will not follow my best-laid plan. No longer will “my” team spend half their day meeting with me and others like me anymore. Silo jobs will die out. Assignment sheets may well vanish into the abyss with shower schedules and get up lists. Yet, at the end of this pathway of curves, valleys, laughter and tears, maybe we will have created something valuable and lasting to leave as a legacy. Maybe we will have transformed our facility into a home.

Would you like to Hear the Voice of Households? Click here to watch video clips with stories, testimonials and great ideas! 

Brain Game: Tendency to Mimic Behavior Can Lead to Positive Change

A recent episode of “Brain Games” featured a social experiment on human behavior. They staged a waiting room where everyone (except one person, the subject) was instructed to stand up every time they heard a beeping noise.Brains

After only a few beeps, the subject began standing up with the rest. She was not rewarded or instructed to do so, but she did it anyway. Slowly all the other participants left the waiting room, leaving only the subject. She kept standing at the beep. Then as new subjects entered the waiting area, all but one person mimicked her behavior and stood at each beep.

We humans are funny creatures. We have a natural tendency to go along with the crowd. Perhaps wanting to fit in is a survival mechanism, or maybe it is a social thing. Regardless, the fact is that even without logical reason we will conform to the environment and behaviors around us. We see it in residents demanding clothing protectors, even thought they never used them before. We see residents head back to their rooms after the evening meal and, at the call light, race to go to bed even though they used to enjoy staying up in the evenings. Could this be an anchor that has held long-term care in its institutional mindset?

Doing what everyone else does is a powerful human trait, but maybe we can use this tendency to create positive change. If people are so strongly driven to replicate the behaviors they are exposed to, then let’s give them some positive behaviors to grab ahold. And this goes for staff, families and residents alike. Look at an objective in your daily environment. What behaviors are mimicked by others? Are they positive ones? Are we building people up or tearing them down? The good news I see in the Brain Game experiment is that even when just one person exhibited a behavior, those around joined in. So it only takes one person to get something positive started.

We have the opportunity to use this human trait to make change, to plant seeds for positive behaviors and actions. If those around join in and behave the way we behave, then we can be a catalyst for change. However, we must be very consistent and aware of how others see us. If we are positive and supportive sometimes, and grumpy and talk about others behind their backs at other times, which behavior will others most likely repeat? Try playing some brain games of your own, and present those around you with positive behaviors. At the same time be very conscious of any negative behaviors you may be conforming to and speak up about them.

Home Advocates — A Stitch in Time!

From UnitingCare in Australia comes this piece by Chidananda Kamath, which describes how his community, Annesley House, has begun the process of culture change following the kickoff with Action Pact in November 2014.

At Annesley, we decided to focus more around culture change rather than the infrastructure due to the physical limitations of the home. In consultation with our staff and residents over two months (Nov – Dec 2014), we decided to introduce a concept of shared leadership to kick off our efforts towards culture change. All staff, may it be RN or RAOs or care staff, were paired with a small number of residents. All the staff members were called ‘Home Advocates’ and were introduced to their group of residents. Home Advocates were encouraged to build relationships with their resident group while attending to their normal duties. This enabled Annesley to not only provide care but also discover new stories about each resident. Then these stories becaSlaters-quilt4ame part of their care plans. Recreational activities were designed around their interests and past experience. For example, there is a resident in our home who is originally from Burma and used to be a tailor when he lived there. Since moving here, he has struggled with social interactions. When his Home Advocate heard his story and realised that he used to be a tailor, she requested our Leisure and Lifestyle team to find a way for him to demonstrate his strengths. A sewing and knitting group was initiated as a result and this resident was invited to lead the activity. He became noticeably happier as a result. There are many more such examples and pleasant findings from this initiative.

One of the key things we tried to address and focus on is our language during this culture change process. For example, calling Annesley ‘home’ instead of ‘facility’. Staff were also encouraged not to pass on the blame when an incident occurred, rather identify the root cause that was at error in the process, which then would assist the whole team. This helped us design better processes with existing resources. Example: Annesley is now using calendar software to record resident appointments, GP clinic due dates, etc., instead of a diary where errors can happen just because of poor handwriting.
We also designed a simple monthly feedback process for Home Advocates which offers them ten minutes with a senior team member, giving them an opportunity to share their experiences or any new ideas.

My personal realisation through this initiative is that culture change is not a project but a process… And we intend to keep it going. 🙂