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!

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”

Fostering Kittens Brings Joy and Purpose to Seniors Needing Care

Life has been more playful in the Huron house lately – with residents feeding off the energy inherent in spending time with fluffy kittens. Early last summer, The Piper Assisted Living and Memory Support joined the Senior Foster Friends program and began fostering sets of kittens with the Great Plains SPCA. They’ve fostered four different sets so far, and the results have been outstanding. Continue reading “Fostering Kittens Brings Joy and Purpose to Seniors Needing Care”

Ride Again: Rickshaws Bring Freedom

Not to mention a welcome breath of fresh air!

Action Pact has watched with delight as our friends at Brewster Village in Appleton, Wisconsin, have continued to learn and grow while they pursue excellence in the household model and person-centered care. A PersonFirst® organization, they demonstrate their commitment in many ways.  Here’s one.

J on rickshaw-2During her work day as a registered dietitian at Brewster Village, Rikki Profant keeps a small brown notebook with her to jot down notes. It’s not a diary or journal of her own thoughts, but rather quotes and stories from residents she takes on bicycle rides via a newly introduced program aimed at getting the elderly occupants of the rehabilitation and nursing home back outdoors. She keeps the notebook “somewhat selfishly” to remember nuggets of wisdom, but more importantly, to recognize the impact that the
Cycling Without Age program has brought to Brewster Village since it was introduced last summer with its first rickshaw.   
We share this excerpt courtesy of USA TODAY NETWORK-Wisconsin. Read the full story and watch a great video here.

Short Stories That Make Us Feel Good!

Brewing Up LIFE!

The photo shown here represents an amazing transformation for one resident of Unitcarboy-brewinging Caroona Yamba, and his story brought joy and tears to a group of staff there.

Why?

This gentleman was deemed as having a rapid decline in cognition, being lost and not doing well in the open Household. Pressure was being applied to relocate him to a smaller more secure Household, as he was not enjoying the one he was in. He was never doing anything purposeful, only moving from sleeping in a lounge chair to table and back to sleeping in a chair. He hadn’t initiated any outdoor activities for months. His conversation was disappearing and he was withdrawn – never joining in activities. Sad, lonely and lost are the words that come to mind.

And then the miracle-working staff went to work. After only a couple of weeks of focus on him, persuasive staff were having success involving him in the village garden, picking the new beans, watering plants and then, “Let’s get the beer-brewing up and running.” He slowly joined in more and more until he decides where he wants to be and what he wants to do. And there’s no fooling him now. “Hey this is yesterday’s paper. What about today’s?” Picture this: a quiet man watching the first fermenting bubbles in a beer brew kit he helped set up yesterday. Tonight was a first! He went on his own to make sure the beer was bubbling as it should. He was observed by staff who were overjoyed at this new interest in life after many months of solitude and inactivity. A real transformation!

This man had been declining rapidly, but now has interest and enjoyment in his life. Two staff in particular fought to keep working with him, as they believed they could retrieve him from his decline. They literally prevented his relocation to what we now know would have been an inappropriate household.

Both of the staff members involved in the resident’s renewed interest in life have recently won awards for their work. They are wonderful examples of inspired care giving that is infectious among the staff.

This story was shared with us by Debra Smith of Uniting Caroona Yamba, a community within Uniting in Australia


 

Just a Few Knick-Knacks…

The following Community Circle occurred during recent dinners with the residents…

Several residents laughed when Joyce Jackson called the figurines around the dining area ‘knick-knacks’. The figurines were then brought to the tables and the residents examined them, asked questions, and expressed their like or dislike of them.

pig-unicycle-2-editThere was a pig riding a unicycle, a rooster also riding a unicycle and a ceramic horse with a clown riding on his back. The horse had dogs on each side.

Mrs. A. said, “When a horse’s ears are pinned to his head, he’s agitated. You better not mess with him.” Mrs. W. then asked Mrs. A. if she likes horses.  A new conversation was started.

Mrs. A. talked about her brother loving horses and she pretended to like them. She admitted she learned a lot, the hard way.

Mr. K. declared, “I wouldn’t want them in my house.”

There were also two dolls, Amish, with no facial features. Mr. K. said, “Where is the face? They don’t look right without eyes.”

There was laughter and smiling faces during the conversations.

We continued the activity the following week during dinner. Residents were asked about the earlier discussion on the figurines. Mrs. A. stated, “If I had a clown riding on my back, I’d be agitated, too!” And then she told this story. “One time my brother was walking a horse with me on its back. My brother got distracted and let the reins go. The horse started running and my foot got stuck in the stirrup and dragged me. I was only 8 years old. I think that’s when my back troubles first started.”

Mrs. K. shared another horse story. “A horse bit my shoulder when I was young. My father had horses and once a horse was being stitched up after jumping a barbed wired fence and he bit me. The vet poured a quart bottle of Methylate on my body. “ (Ed.: Yeow!)

Everyone enjoyed the sharing of the objects and the good conversations around the dinner table.

This story was shared with us by Joyce Jackson of Windsor Meade, a community within Virginia United Methodist Homes


Diet Liberalization Program Makes a Positive Difference for Residents

Sentara Chesapeake Nursing Center has embraced New Dining Practice Standards by initiating a diet liberalization program for its residents as part of their culture change journey. Research has shown that providing more options in long term care settings provides positive resident outcomes. It can also lead to a better quality of life by allowing residents to choose the foods they enjoy eating. Lastly, this initiative can lead to improved nutritional status and a reduced prevalence of weight loss that ultimately is a better experience for our patients.

How does it work? 

36739278 - dishes icon set
Choices, choices…

Once a resident who was receiving a modified diet is identified as a candidate, a Bedside Swallow Evaluation is performed by a Speech Therapist to ensure that a diet upgrade is clinically safe for the resident. Over the last three months since Chesapeake began diet liberalization in the facility, therapeutic diets have decreased to less than 27% of residents as compared to an average of 51% in other Life Care sites. Conversely, the number of residents receiving regular texture diets have increased from 49% to 77%.

The new diet option has been well received by Chesapeake residents and their families. The new dining practice standards have also allowed the opportunity for Sentara Life Care to move away from other more typical institutional nursing homes practices that limit resident choice. Liberalized dining enables a culture that fosters resident’s right of choice, by allowing residents to eat what they want. This program is only the beginning of Life Care’s culture change journey as these initiatives will be rolled out to other Life Care sites very soon.

Story shared with us by Sentara Rehabilitation and Care Residence – Chesapeake, VA. From their November newsletter.

More Freedom for Staff Means a Better Life for Residents

Thursday, 1:30 p.m., the moment residents in Inglis House’s 3-South neighborhood have been waiting for has arrived. It’s Tea Time. They steer their wheelchairs toward the solarium where snacks, music, companionship, and of course, a wide assortment of tea await.

“It’s my favorite thing we’ve started since I’ve been here,” says Michael Kelly, Neighborhood Life Leader. He latched onto the idea while looking for a way to divert residents from dwelling on their debilitating diseases. Continue reading “More Freedom for Staff Means a Better Life for Residents”

Joy in Mudville: Casey Goes to Bat at The Piper

Yes, pitcher Casey Barnes was on the Kansas City (KS) T-Bones disabled list in 2015 after catching a sizzling line drive with his bare hand, injuring a thumb.

No, that is not why he moved into The Piper Assisted Living and Memory Support for the 2016 baseball season. Continue reading “Joy in Mudville: Casey Goes to Bat at The Piper”