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.


An Australian Elder Story

This was told to me by Russell Elm, who I met in Melbourne, Australia. He was from a facility in Queensland and shared a great story about their work shed and an Elder named Doug.

I knew that Doug had spent his entire life in mechanics, machinery and maintenance.

Doug was having a pretty hard time adjusting to his new life in our aged care facility. A man’s man, he was now surrounded almost entirely by women, caregivers and residents alike. So I thought Doug might enjoy becoming part of our maintenance ‘team’ now and again.

“Would you like a cuppa tea?’ I asked Doug. “If so, come on down to our workshed.”

“No, I don’t want a cup,” Doug replied in an irritated tone of voice.

“Well, would you like to come down the shed, anyway?”

“No, I don’t want to come down to the bloody shed!”

“We’re all blokes down at the shed, you know,” I said.

Finally, after many invitations, Doug showed up at the shed. It took him ages to get down there with his walker. But once there though, we invited him to sit down and have cup of tea.

“No, I told you, I don’t want a bloody cup of tea.”

But it was obvious he enjoyed his visit and we showed him around. Took him out back where the guys hang out and have a smoke and talk. I could tell he was interested.

As he took his leave, I asked him again to come back for tea anytime.

“I’ll bring the biscuits [Australian for cookies],” he said.

“You don’t need to, there are usually plenty here,” I started to say… And then it dawned on me, and I quickly changed my reply in midstream.

“Please, bring the bikkies, Doug, and we’ll supply the tea,” I managed to say.

“Great, see you soon,” he smiled as he waved good-bye.

Russell finished his story confirming that, 

“We all, including the Elders we care for (like Doug), need to be able to give care as well as receive care. Otherwise, we feel off-balance, like we’re a burden to others. So, somehow, we have to figure out ways to create the right climate where the residents are giving to us, giving to the community and giving to each other. And we need that care, too. It really made me feel good that Doug wanted to visit us and wanted to treat us to biscuits.”

I love the affectionate way that Australians talk. They often shorten words and end them with ‘ie’, like ‘bikkies’ for biscuits, ‘rezzies’ for residents’, ‘barbie’ for barbeque. They also create fun descriptive words out of common things. For example, ‘sausage sizzles’ for bratwurst and ‘fairy floss’ for cotton candy. Wouldn’t it be great if we put a little more fun and affection into our English!


Action Pact unveils a Comprehensive, Self-Directed Online Learning Program for Household Coordinators

In the household, every staff member shares responsibility for creating the best possible quality of life within. But primary accountability for molding their efforts and organizing household resources to achieve that goal lies with the household coordinator.  

Much like the administrator’s role in the organization, the household coordinator is accountable for a broad range of operations in the household, requiring an equally broad set of competencies.

Building teams … fostering leadership skills in self and others … managing financial resources and HR functions … facilitating communications throughout the household and among community leaders … leading QAPI … overseeing the household’s implementation of the organization’s emergency plan … nurturing continuous learning among staff – it all lands on the household coordinator’s plate. 

Plus, she or he must have a firm grasp of what makes a true home that honors resident-directed life while creating a rewarding work environment for staff.  

It’s imperative that household coordinators have easily accessible and comprehensive training in all these areas if our transition to resident-directed life is to succeed. That’s why Action Pact has developed an interactive, online training program specifically for household coordinators.

“This course provides a path for growing and transforming committed staff into vital members of the organization’s leadership”  — Linda Bump, Household Model Pioneer

“Our aim is to illuminate the role of household coordinators in creating the new environment, and help them develop the skills they need to lead, coach, guide, and problem solve along the way,” explains LaVrene Norton, Action Pact Executive Leader.

The curriculum includes four courses – physical environment, organizational structure, interpersonal relationships, and resident-directed life – with 21 online lessons that bring together expertise and insights gained from two decades of operating in the Household Model.

Learners will have the opportunity to interact directly with Household Model pioneers proficient in staff positions such as household coordinator, nurse, CNA, social worker, therapeutic recreation, dementia care, and administrator. They will receive one-on-one guidance, answers to questions, discussion to assist them in integrating their new knowledge into their work, and additional resources to address individual needs and concerns. 

“It’s an experiential approach designed to bring new knowledge and confidence to both the leader in training and the entire household team … it will help infuse the household with new opportunities for resident-directed life,” says Action Pact Consultant Linda Bump MPH RD.  

“Staff’s improved self-confidence and a more meaningful life for residents will reverberate through the entire household as it becomes an ever-learning environment,” adds Norton.

Much like a college course, the program includes online lectures, homework assignments, and tests. Interactive learning modules will literally put vital information at staff’s fingertips in the moment they most need it. Upon completion, learners will receive a certificate and an evaluation of their progress.

“The program presents vital information in a creative way that is highly engaging and easily absorbed by staff without the constraints of a classroom,” says Norton. “Self-directed, it is the most effective and efficient means of learning for caregivers on the go.”

To find out more about the learning program and how to acquire it, contact Action Pact. 

414.258-3649     |     learning@actionpact.com


Self-Directed Mobile Learning Inspires a New Generation of Caregivers

by Keith Schaeffer

Thanks to emerging technology, long-term care staff across entire organizations are starting to take learning into their own hands, and that’s a big step toward enabling a good daily life for residents.

Staffing is a big concern at Pilgrim Place in Claremont, CA, as a strong economy lures caregivers away with more lucrative jobs elsewhere, while baby boomers in growing numbers still need care.

To get them to stay, “we’re having to excite these millennial and Generation Z” staff members, says Dawnyell Varela, Director of Assisted Living. After testing a new mobile learning system with a dozen co-workers, she believes getting them excited about growing in their jobs and creating home for elders may be as simple as picking up a smartphone.

“Today’s generation is always on the phone, on games, and on the internet clicking this and that,” she says. “This is how they learn.”

“A lot of people, especially the young, don’t read long, laborious stuff,” adds Angela Hunt, Administrator and Chief Operating Officer at The Cedars in Portland, ME. “They are used to cell phones and quick messages.”

Hunt and her steering committee are trying out the same mobile learning system as Varela, with an eye toward using it to prepare staff for The Cedars’ transformation to the Household Model over the next 14 months. The learning system, created by Action Pact, instructs in a concise and highly interactive manner that caregivers on the move can easily absorb, says Hunt.

Subject matter in the first series of lessons ranges from the basics of person-centered Care and the Household Model to food safety, hospitality, answering the doorbell, changing lives with toast, and more.

Complete with buttons to push, questions to answer, and praise for correct responses and completed courses, the system aims to hold the learner’s attention with short videos and dramatizations, pithy text, music, and colorful graphics.  “They use a little bit of everything,” notes Hunt.

Learners can relate to the people portrayed in the new system’s videos who “wear today’s clothes and use today’s verbiage and slang – like someone I might see walking through my door at this moment,” says Varela. Characters in previous learning videos and DVDs used at Pilgrim Place were clearly out of the 1970s, she says.

Varela knew the new system would work after using it for staff in-services. Some staff members are now requesting it for future trainings. “They like it, it’s exciting for them, and the fact they’re asking for it shows we really do have something here,” says Varela.

Staff also use e-learning when they have just a minute, she says. “If they’re not sure how to do dining or something else involving our work here, they can watch a short learning module… we are fortunate to have a lot of self-directed learners.”

People learn more on their own rather than being force fed.

Socrates (469-399 BC)

In fact, we’re all self-directed learners – everybody has the drive to learn more, says LaVrene Norton, Action Pact founder and Executive Leader. Think of the times we’ve gone on the internet to learn things like how to make hummingbird nectar or change our car’s oil, she says.

It’s been known since at least Socrates’ time that we learn and retain information better by grabbing it when we want and need it rather than being forced to sit in a classroom. Self-directed learners often exhibit superior critical thinking, problem solving, and leadership skills and higher job satisfaction.

Perhaps I buy an old house that needs a garbage disposal, a kitchen sink, and tile on the bathroom floor. So I search the internet for the best garbage disposals and sinks to buy, the tools needed, and how to tile the floor – all the instructions are complete with video on YouTube, including for the specific brands of disposals and sinks I buy. 

And then I’m so proud of myself!

“We need to create for our staff that same kind of curiosity and excitement that drives people to learn on their own,” says Norton. “If I’m self-directed, I’m going to take the initiative, not just in learning, but also helping elders have a good day every day in their home.”

Long-term care organizations often fail to prioritize learning among staff, she says. Nurses learn critical thinking skills in college, but CNAs and staff in dining services, housekeeping, activities, and maintenance aren’t given the opportunity and time to develop their own analysis, judgment, and decision-making abilities.

E-learning enables staff in all positions to develop critical thinking, adds Varela.

A nurse may know how to respond to a resident living with Alzheimer’s who is angry and lashing out, she says. But a housekeeper walking into that kind of situation may not know to redirect the resident and not take his or her anger personally.

“So when I’ve seen that – and I have,” says Varela, “I’ve had them watch a learning video, and they told me, ‘Thank you so much Dawnyell, now I understand.’”

Self-learning on the internet is less scary than in the classroom, she adds. As a 40-something studying for a new career in long-term care, she felt awkward going back to class after 20-plus years as a restaurant staff trainer. “I felt a little intimidated. I didn’t want to raise my hand; I didn’t want to look foolish,” she recalls.

Now she goes on-line to fulfill her annual requirement of in-services. “I can learn at my own pace, and if I mess up, I mess up with just me and my computer and not in front of a big class,” says Varela.

Managers in organizations often fall into the trap of assuming people don’t want to learn, says Norton, simply because they aren’t strong readers or they didn’t go to college.  It seems most reasonable for those reasons and because of the turnover to just give them a list of repetitive tasks to complete every day.   As a result, opportunities for growth are minimal.

“People don’t need to be told what to do, they just need to have permission and encouragement to grow and learn, plus the resources and time to make it happen,” she says.

The old incentives for retaining staff – a slight pay raise, a modest change in job title – aren’t working, she says. Instead, we need to ignite the desire for self-directed learning so staff can find meaning and satisfaction in their jobs.

“We want to create hunger for knowledge and skills. The internet and mobile learning offers a way that’s fun, exciting, and interesting so that staff want to learn more,” she says.

People who aren’t strong readers can learn from creative graphics and videos. A single, still image can convey a complex idea, enabling large amounts of data to be absorbed quickly. When that picture and its story is shared with everyone in the organization over the internet, person-to-person, and in group meetings, it sparks a new culture of self-directed learning, says Norton.

So how do we create a culture that values learning?

Start from day one

Stimulate learning from the moment prospective staff walk through the door by giving them internet links to training on person-centered care so they can decide if they really want the job, says Norton. And then proceed after hiring with ongoing, in-person training to quickly integrate them into the workplace culture.

Focus on growing self-awareness of the person’s own ability to learn and prepare them for participating in functional teams where learning develops naturally. Hold deep conversations with every staff member at regular intervals – perhaps at 90 days after hiring and every six months thereafter, she urges.

Make learning available 24/7

Pilgrim Place and The Cedars provide laptops and iPads for staff to access elearning modules and other resources on the internet and from training videos acquired by the organization. These and other mobile devices can be used for virtual discussions among staff and for sharing ideas and information with other organizations.

Consider keeping an iPad on the kitchen counter in the household, so that staff can access cooking websites to learn how to prepare a resident’s favorite childhood meal.

Encourage staff to sit down with a resident or two in the living room to watch an interesting learning module, followed up with discussions about daily life in the household.  Result: an activity for the residents at the same time staff is learning!  Other self-learning techniques like community and learning circles and work team huddles could be held daily.

Be creative! Richfield Retirement Community in Salem, VA, established a “transformation center” open 24/7 where bulletins, posters and always available videos chronicle the community’s progress toward the Household. Staff, residents, and visitors can enjoy a moment of respite in comfortable chairs with coffee and snacks provided while learning about culture change.

Make learning fun

Scavenger hunts, either on-line or within the physical community, are effective and entertaining ways to engage staff and residents in learning. Try giving everyone a list of the Essential Elements of the Household Model and ask them to search for examples of, say, how a household demonstrates home as sanctuary, or how the dining room fosters a sense of grace. Follow up all such activities with group discussions in learning circles about what was learned.

Reward learning with praise and encouragement

Staff thrive on being told when they do well, says Varela. She maintains a “Wow!” board for posting “praise reports” for everyone to see when a staff member accomplishes something noteworthy.

Often, staff members with little formal education feel they can’t learn like more successful people. “Let them know they can; that they can be in charge of their own learning,” says Norton. “Asking them what they would like to learn more about in order to be the best they can be will help them see themselves as self-directed learners.”

Involve residents

“Our residents are very curious about how we are learning and they want to see,” says Hunt. Elders participate on the steering committee that is reviewing the Action Pact mobile learning system.

At Pilgrim Place, staff plug their electronic gadgets into the living room TV and watch training videos with residents. “There’s not a single video in the new mobile learning system I’ve seen that residents could not participate in and learn from,” says Varela.

But think critically about what is appropriate to discuss with residents, cautions Norton, and then work and create learning activities together while chatting with residents at the dining table.

“Try to get a sense of what it would feel like if this were a good day at home and a dear friend stops by. How would that look and feel? If we engage staff in talking and thinking about that, we can begin to grow critical thinking skills in self-led teams,” says Norton.

Giving staff the tools and encouragement to pursue self-directed learning empowers caregivers to be successful and find satisfaction in their work, and that translates to better care for residents.

“It’s a parallel process,” says Norton. “If we want a better life for residents, we must want a better life for our staff.  If we want the staff to ask the residents, ‘What do you need?’ or ‘What do you want to do today?’ then we have to ask the staff, ‘What do you want to learn?’ or ‘What resources do you need, and how can we help?’ ”


Grow A Culture of Critical Thinking to Calm Survey Angst

This article was written by Action Pact writer Keith Schaeffer for the Pioneer Network, and published on their blog on June 12, 2018

Anxiety over the new Mega Rule survey process that examines caregivers’ critical thinking skills may have some long-term-care providers on edge, but not at Garden Spot Village in New Holland, PA.

“Our focus on critical thinking and empowering staff over the years in working with Action Pact has put us in better position,” says Steve Lindsey, CEO. “Getting everyone involved, not just assigning tasks but helping them understand the big picture, the issues, and how to make decisions has created a high level of critical thinking throughout the organization.”

How to achieve all that is the subject of Action Pact’s intensive session, Navigating the Mega Rule; Building a Highly Involved Culture of Critical Thinkers, at the Pioneer Network’s 2018 Annual Conference in August.  Presenters include LaVrene Norton, MSW, Megan Hannan, MS, Gloria Blackmon, RN, Glenn Blacklock, MS, and Linda Bump, MPH, RD, NHA.

Their purpose isn’t to tell attendees how to develop critical thinking among their staff, says Hannan, but to give them the information and understanding needed to chart their own course.

“We really appreciate that Action Pact’s is not a cookie cutter, pre-formulated approach,” says Lindsey. “It’s a journey of learning together and shaping something that is different for each organization’s culture.”

Garden Spot Village operates six skilled nursing households, each with its own culture shaped by those working and living there. Staff’s critical thinking abilities enable them to weigh carefully what they want to do while understanding it within the context of the regulatory environment and the lives of the people they serve, says Lindsey.

But most care homes leave critical thinking to the leadership,middle management, and nurses, says Norton. CNAs and others are simply told what to do, often without understanding the importance or context of their tasks within a person-centered, resident-directed culture.

But now, CMS expects hands-on caregivers to be critical thinkers, as well. Brains

All staff must know about the new survey requirements and their organization, residents, and services provided, and how to use that knowledge to better serve the residents. Do they know what to do when an incident occurs … that pudding should not be offered to Vivian because she is allergic to eggs … or that serving George dinner in his favorite nook outside the usual dining areas still requires proper hand hygiene and food safety practices?

Nurses develop critical thinking in college and in clinical training while going through a process of study, discussion, practice, feedback, reflection, further study, and more discussion. CNAs and other hands-on caregivers rarely get the opportunity.

“If we really expect them to think things through, know how to collaborate as a self-led team, and make decisions, then let’s give them the time, information, and education to develop critical thinking,” says Norton.

Person-centered environments with permanently-assigned, cross-trained staff working in teams to serve small groups of residents naturally enable caregivers to know the elder’s needs and desires well.

But staff’s capacity to contribute becomes much higher when they also are taught critical thinking skills … how to analyze, develop good judgement, and make decisions, says Norton.

For instance, CNAs know to inform the nurse when something doesn’t seem right. But what if the nurse fails to follow up after being told?

Rather than letting the matter drop or complaining to peers that “I told the nurse but nothing was done,”a CNA trained in critical thinking understands it’s important to follow up to ensure the nurse got the message.

“A sense of responsibility grows along with a more integrated understanding about how to serve the resident, and thoughts and actions toward her become more accurate,” says Norton.

As information is shared, the whole work team gains a deeper understanding and capability. They think through challenges as they arise, day or night, “determining whether to take the initiative and deal with it in the moment, or knowing when they shouldn’t take the initiative and call in resources from outside their team,” says Norton.

“It bubbles up in different ways in how life is lived and the sense of empowerment that residents and staff have … to live life on their own terms,” says Lindsey.  That and a CMS Five-Star rating has come from growing critical thinking skills at Garden Spot Village, he concludes.

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Ahead of its Time: Action Pact’s PersonFirst® Methods Bolstered by U.K. Study

A study(1) in 69 care homes in the United Kingdom affirms principles that Action Pact’s PersonFirst® train-the-trainer program has advanced for 20 years – that person-centered care with meaningful social interaction as simple as daily chats can improve quality of life for people living with dementia and enhance their relationships with caregivers.

Published Feb. 6, 2018 in PLOS Medicine, the study found improvements in agitation, pain, and neuropsychiatric symptoms(2) along with a nearly 20 percent increase in positive care interactions with staff. Continue reading “Ahead of its Time: Action Pact’s PersonFirst® Methods Bolstered by U.K. Study”

Nursing Home Residents Find Purpose Through Service and Community Commitment

Every month, hundreds of nursing home residents across California board shuttle buses on their way to their local homeless shelters. They arrive with pans full of meals they’ve prepared themselves, and enough food to feed crowds that often exceed 100 hungry neighbors.

Heart to Serve logo

In 2016, Rockport Healthcare Services became the first organization to involve every nursing home and assisted living community they serve in fulfilling community service through its A Heart to Serve program . This community service-centered program presents service opportunities to every resident, including those who have physical and cognitive challenges, such as dementia, stroke, MS, Parkinson’s disease, or vision impairment, so that they can experience the transformative power of purpose through service. Continue reading “Nursing Home Residents Find Purpose Through Service and Community Commitment”

Four Ways to Build the Culture You Want to See in Your Senior Community

I had a conversation with a leadership team recently that was incredibly frustrated by the initiative being taken by aides in the building. The complaint was that they were sitting around at the nurse’s station when they weren’t busy with cares. Leadership wanted them to be engaging with residents. But in most traditional nursing homes, this is not what CNA’s understand as their job. To get to this place we have to create a culture where engaging with residents is everyone’s job. Continue reading “Four Ways to Build the Culture You Want to See in Your Senior Community”