Monthly Archives: January 2017

Insider’s Tips for Analyzing Activities Programs

My mother had been an artist in her later years, but she stopped painting when she began living with memory loss. Instead, she took comfort in listening to music and in nurturing a baby doll. Ron’s dad studied architecture as a young man, but never had the leisure time to pursue drawing or art.  When he moved into a memory care community, he flourished in the Memories in the Making painting program.  We worked hard to find care homes that nurtured our parents and my background in healthcare helped us develop a few insider’s tips for analyzing activities programs.

“Families need to share information about favorite hobbies and they also need to be ready for their loved one to try new things and possibly change interests,” says Alisa Tagg, President of the National Association of Activity Professionals. Alisa has helped dozens of facilities build meaningful activity programs.

Here’s an example of how one woman thrived on learning a new skill and giving back:

Mary’s family was amazed when she got involved in a jewelry-making class in the memory care unit.  Mary had never thought of making jewelry and she never even wore necklaces, bracelets, or earrings.  But she loved beading and was thrilled to share her creative designs with others. Producing something beautiful for others motivated Mary. The facility helped her sell her jewelry and she contributed the money to the activities budget and also donated to charity.

Alisa knows how emotionally challenging it is for families to find good care facilities for their loved ones. Here are some of her insider’s tips for analyzing activities program.

See For Yourself

“You have to view what is going on in the activity room,” she says. “See how the staff interacts with the residents. If there’s an entertainer, is the staff in the back of the room, charting and talking? Or are they in the front, dancing, and singing and engaging with residents and families?”

Look at the activities calendar. Visit the facility at different times and on various days and see if the activities in progress match the scheduled events.

Encourage Engagement

Study the schedule to see how often the residents are engaged, rather than just being entertained. Are they invited to contribute to community service projects? Are they going to sing-alongs or helping with baking projects? People with memory deficits need a variety of activities. Look for a variety of programming that balances the four areas of wellness—spiritual, mental, physical, and emotional.

Visit Programs of Interest

Visit the programs you think your loved one might enjoy.

Find out how many staff members assist in the activities program.

Does the care staff seem aware of the importance of activities? Is there one-on-one assistance for those who want to participate and need extra attention?

Watch for Independent Projects

Is there a place for puzzles, games, cards, and other things people can enjoy independently?  Are there opportunities for residents to contribute to their community and to help others around them?

Share Questions and Concerns

“Every facility should have a plan of care meeting, where family can share their expectations and concerns with the nursing staff,” Alisa says. “Ask how your loved one is doing. Share your insights.

A good facility will welcome that meeting.”

Stay Involved

Stay as involved as you can. Helping your loved one connect through meaningful activities may involve trial and error. Get to know the other residents and their families. You’ll stay engaged with your loved one and create a sense of community with a lot of other wonderful people as well.   #

To learn more about Alisa Tagg, BA ACC/EDU AC-BC CADDCT CDP and the National Association of Activity Professionals, visit  https://naap.info

To delve into creative activities do you can on individual visits, read my latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Five Secrets for Making Date Night Great

I caught up with Nettie Harper and Kelly Gilligan, co-founders of Inspired Memory Care, Inc. as they were rushing down the streets of Manhattan, off to consult with a client. I loved hearing the city sounds, horns honking, cars edging past, a lone dog barking, as they shared their five secrets for making date night great. (I have changed the names in this story to protect people’s privacy.)

During my mother’s journey through dementia, my father was always seeking ways to stay connected with her. He would have loved the ideas in this article.

Five Secrets For Making Date Night Great!

Margaret slipped on a string of pearls and surveyed herself in the bathroom mirror. Her royal blue silk dress, one that her husband Harold had bought her for their 40th wedding anniversary, still looked good. She fingered her hair nervously and hoped this evening would go well. Their last weekly dinner date had been a disaster. Harold had felt uncomfortable in the restaurant, even though they’d chosen it together. He picked at his food and barely spoke a word. Margaret had to hold back tears as she looked around the brightly lit room and envied all the happy couples and families, laughing, talking, and savoring their food.

Tonight, she vowed, would be different. Tonight, she was prepared, coached by Nettie Harper and Kelly Gilligan of Inspired Memory Care, Inc, in Manhattan, NY.

She’d chosen a quiet restaurant and reserved a cozy corner table, away from the bustle. Harold’s face tightened as they strolled in, but she took his hand and he squeezed hers. After they settled into their seats and ordered their meal, the dreaded silence descended.  She was about to say, “Do you remember the time we took my cousin from England out to dinner…?” but she bit her lip. Harold’s eyes went blank when she prodded him for specific memories.

Instead, Margaret unfolded an article on sailing, one of Harold’s passions, and offered it to him. “Could we read this together?” she asked.  The large print made it easy to see and Harold began reading aloud, weaving in the open-ended questions Nettie and Kelly had written in for them to discuss.

“What does this make you think of?” he read, after a few moments.

“The sea,” Harold said.

Margaret took a turn reading aloud, and Harold leaned forward a little.

“Would you ever go out on such stormy seas?” she asked.

“If I felt strong I might,” Harold said. “I always liked sailing with you.  Remember that time with the snow and the animals? Those big fish?”

Margaret smiled and took Harold’s hand.

“That was our whale watching cruise. I do remember. I really liked the penguins.”

“What did I like?” Harold asked.

“The glaciers,” she said. “And the dancing.”

In their work, Nettie and Kelly often coach care partners like Margaret, offering creative ways to stay connected with loved ones who are living with dementia. Their idea of bringing along an article on one of Harold’s favorite topics transformed the dinner into a time of wonderful sharing. On future date nights, Margaret continued to bring along articles on topics of great interest, as conversation starters.

Nettie and Kelly’s company, Inspired Memory Care, Inc. (IMC), is founded on the belief that older adults, both with and without memory impairment, should have access to life-enriching, esteem-building experiences, sharing their wisdom and pursuing their passions each day.

“We encourage couples and families to commit to rituals and set aside time together, just like you would without a memory impairment,” says Nettie. “Date night is an important part of the week, a chance to do something special and unique.”

“We coach people to ask open-ended questions, such as, ‘Would you rather..’  “Would you ever…’ ‘Tell me more about…’” Kelly says.

“‘Tell me more” is one of the strongest questions you can ask. Frequently words come flooding out.

After posing an open-ended question, they encourage care partners to wait, allow silence, and give people a chance to respond.

“If we jump in and give the answer, we’re taking away the strength of the individual,” they believe.

So what are the five secrets to a successful date night?

  • Bring a conversational catalyst, such as an interesting article to discuss.
  • Ask open-ended questions.
  • Wait lovingly for the answers.
  • Meet people where they are.
  • Celebrate your time together.

Use these five secrets for making date night great and create a meaningful and connective atmosphere — for any couple or family — regardless of cognitive abilities!

To learn more about Kelly and Nettie, please visit http://www.inspiredmemorycare.com/ 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Using Creativity to Live Successfully with Dementia

“Creativity is evident in every one of us,” says Michelle Niedens, Director of Education, Programs and Public Policy, Alzheimer’s Association Heart of America Chapter. Every time I hear Michelle talk about the creative aspects of living with dementia, I am moved. I was so honored to have Michelle speak at my book launch for Connecting in the Land of Dementia. I treasured what she said about using creativity to live successfully with dementia and I asked if she would allow me to share her words of wisdom and caring with you. Here is her beautiful talk.

Using Creativity to Live Successfully with Dementia

by Michelle Niedens

It has been said that “we are helped by what is not, to use what is”.    In Alzheimer’s disease, there are some things that are not.   But welcoming this philosophy of using what is allows us to explore all the parts that are.   As part of projects focusing on creativity at the Alzheimer’s Association, I have heard many people talk about how they are not creative.   In one way or another, they find a way to let me know they believe they cannot create art, or stories or a collage or whatever forms of creation lay before them.    Yet if we allow our minds to really think about the place of creativity in our lives, we could make a case that it is evident in every one of us.   Whether it be building book shelves, writing poetry, the way we frame our words in conversation, the way we problem solve, the way we play with children, the way we garden and even the way we convince ourselves of things.  Life is both complicated and simple and requires creativity to survive.   It is almost as ever present as thought and breath.

In the poem, “the Necessary Art of Salvaging”, Barbara Lau writes;

In the dumbfounded middle of loss
We still manage to
Open mail
Feed the dog
Answer the phone.
The letter came the same day
My doctor announced
That the minnow heart inside me
Had stopped pulsing.
Back home I ate the lunch placed in front of me
And when the envelope fell through the slot
I opened it.  The handwriting said
That a poem I wrote months ago
Would be released on a polished
White sheet of daylight.
I will never think of it as a fair exchange
But at least I know how to salvage,
How to search through the rubble
For that one unbroken teacup.
In the earlier stages of Alzheimer’s disease, creativity can serve to challenge the mind in new ways, what some might call brain exercise.   It can allow the expression of the mixture of feelings in more comfortable ways or when there are no clear words to do so.    Creativity can connect people and move our center from the relinquishing to the replacing.
In middle stages, there is something lost in Alzheimer’s disease that many of us only wish we could shut off.  Somewhere in our frontal lobe, there is a part that tells us what we cannot do.    It inhibits us.   The part that tells us we would not like a food even before we try it.   The part that tells us we wouldn’t be interested in a play or movie just because of some small variable.   The part defines what we are willing to do or try or even to direct some interest in.  For some people that inhibition is significant.  It can be deeply embedded by early life expectations, culture, messages or even trauma.  We can appreciate that there are times that inhibition is a good thing.  But one only has to be around a person in the middle stage where such inhibition has been diminished to see the good side of that loss as well.
I remember one woman who would come to a poetry group with me every month.   She lived in a long term care facility due to the significance of  Alzheimer’s disease.   She was an only child, parents long gone.  She never married and never had children.  I surmised from her history that perhaps she had always struggled with understanding and interrupting social cues and likely never had an insight into her emotions that allowed her to sort through the depression and anger that periodically flared.   These tendencies did not disappear in Alzheimer’s disease, but what appeared was a person more open to others, less concrete in her interpretations and increasingly able to find ways to connect – always through creativity.   On her last day attending the poetry group, she brought me a clay pin she had made.  It was the shape of a heart – kind of.  It was lop sided with dents where her fingers had tried to mold the clay, painted red with places missed, and wrapped in a kleenix.   I still can picture her face as she handed it to me.  It is one of the most treasured pieces of jewelry I possess.
Another poem, written by Lois Hjelmstad, perhaps better summarizes the significance of incorporating creativity in the experience of dementia.
Pipe Organ
I am not a large woman
And I am aging
I have been diminished by cancer, surgeries and chronic illness
But when I sit at the console
And my fingers touch the keys
My spirit soars.
Here – in the glorious sound –
My muted voice sings again
My faded beauty sparkles once more
My waning strength shakes the rafters.
What I am trying to say is this.  There are all kinds of important ways that focusing on creativity adds to the lives of those with a dementia.  Creativity brings laughter and fun, which we all need.  Creativity brings connections to others.  It provides a mechanism to share feelings and thoughts when other avenues may not be available or as clear.  It can be the way that unfinished business is sorted and that we grow into someone we wanted to be.   In other words, creativity can add meaning.
When I talk with individuals diagnosed with a dementia and their families, conversations include understanding what is lost and making decisions based on those that are anticipated.  But what is most important is finding a way to successfully live each day.   Finding those pieces that allow the muted voice to sing again.   And let the waning strength shake the rafters.  #
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Live Well with Dementia

“This is one of my favorite songs. What do you think of it, Fran?” We were sitting in Mom’s room in the memory care community, listening to a recording of The Very Thought of You.  Even though my mother could no longer answer this question, I liked hearing my father ask it.  He honored Mom as his long-time beloved conversational partner.  Through this simple action, he was helping her live well with dementia. His example helped me do the same.

This article by Karen Love, Executive Director of Dementia Action Alliance, reminded me of my dad’s positive outlook. It inspired and touched me and I wanted to share it with you.

Live Well with Dementia

By Karen Love, DAA Executive Director

In 1968, Robert Rosenthal and Lenore Jacobson published groundbreaking research that showed teacher expectations of students became self-fulfilling prophecies. At the beginning of a school year, first and second grade students’ IQs were tested. The researchers randomly selected a group of students regardless of their actual test results and led the teachers to believe that this group was capable of great academic achievement. The teachers, perhaps unwittingly, gave the students with the presumed higher IQs more positive reinforcements.

At the end of the year, the students were retested. The group labeled high academic achievers did, in fact, show higher achievement than the other students. Robert Rosenthal summarized this research finding as – “What one person expects of another can come to serve as a self-fulfilling prophecy.” This outcome, retested and proven by many others over the years, has become widely known as the Pygmalion Effect.

The dynamics of the Pygmalion Effect have significant impact for those who want to live well with dementia. There is abundant anecdotal evidence among person-centered dementia care experts that the Pygmalion Effect similarly applies.  Family, friends, and others may have low expectations regarding what people living with dementia can and cannot do and how they can function and live. While they may not even be consciously aware of this view, these lowered expectations affect every aspect of the relationship. They don’t engage, interact, and provide opportunities for interesting and fun activities at the same level they would if their expectations were higher.

I experienced the Pygmalion Effect this past week at a memory care assisted living community. I saw a resident sitting alone, apart from the others. I asked a staff member about her and was told she had very advanced dementia.

“What does she like to do?” I asked.

“Nothing, she can’t do anything.”

I knelt beside her and offered a small pillow covered in a soothing, tactile fabric. She immediately started stroking the pillow and then explored the seams. Her expression turned sweet and serene.  Touching the fabric was comforting to her. As I was getting ready to leave, the woman’s daughter arrived. I introduced myself and described how much her mother enjoyed the tactile pillow.

“Mom was a seamstress and loves the feel of fabric,” her daughter said, smiling at her mother. “I should bring one of the lap quilts she made when I visit.”

Her daughter was reminded of something her mother liked to do and she felt grateful she could bring something that would please her mom.

I was reminded how important it is to have interesting and engaging items when we visit. Examples include scented lotion, a tactile pillow or fabric scraps, and an enjoyable short story to read aloud.

Helping someone live well with dementia invites us to open our eyes, our hearts, and change our mindset.  Instead of perceiving limitations, we can spark the Pygmalion Effect by setting positive expectations. We can help make living well with dementia a self-fulfilling prophecy.

Karen Love, gerontologist – Executive Director, Dementia Action Alliance – Powered by People with Purpose 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Adapting to Dementia: Laurie Scherrer’s Inspiring Story

“I’m having a slow day,” Laurie Scherrer says, when I call her Pennsylvania home for our scheduled conversation on adapting to dementia. “So bear with me.”

It was easy to bear with Laurie, as she is bright, positive, articulate, insightful, and authentic.

I met her during a telephone interview for the esteemed podcast, Alzheimer’s Speaks, which she co-hosted along with founder Lori La Bey. I was so impressed with both of the women’s insights and interviewing abilities, and I wanted to learn more about how Laurie managed her life with early onset dementia.  Here are some highlights from our conversation.

From Sales Leader to Closet Cleaner

How do you go from excelling in a distinguished business career as a top manager and sales leader to becoming an unemployed 55-year-old woman who can no longer do a simple math problem or weed her prized garden?

That’s what happened when Laurie Scherrer was diagnosed with early onset dementia in 2013.  After days of languishing at home, cleaning out closets, and feeling like a complete nobody, she realized she needed to take action. And being a woman filled with determination and creativity, she did just that, with her husband offering his unwavering support.

“I have a passion for excellence and the recognition that comes with it,” Laurie says. “Being Number One in sales drove me.”

Since she had nothing to push towards, she turned toward writing blogs and to her former passion for sewing, so she’d once again feel accomplished. Plus, Laurie wanted something tangible to give to her family members, something that said, “I love you.”

Forgetting the Curves and Going Straight

In her earlier days, before her career consumed much of her time, Laurie was an accomplished seamstress, reveling in creating costumes for church programs. She had loved sewing quilts and clothes and decided she’d return to her former hobby.

She sat down with yards of fabric, ready to cut quilting squares. But hard as she tried, she could not figure out how to cut the fabric. She was slumped over her sewing machine, weeping, when her neighbor dropped by.

“I can’t do this anymore,” Laurie said.

“I’ll help you,” her neighbor said.

She brought over a cutting board with lines in it and talked Laurie through the process of cutting the cloth.

“Once she helped me lay it out, I could do it again,” Laurie says.  

Laurie has since created blankets, pillowcases, burping cloths, and more for her family.

“The straight lines are working for me,” she says.

Noticing the Blessings

Laurie is making the most of her life. She treasures her glorious back yard and her deepened relationship with nature.

“Before, I was so busy, I never saw all the beauty around me,” she says.

She also treasures her worldwide friendships with people living with dementia, which she nourishes through video chatting and posting on Facebook. She and some chat friends recently started a virtual spiritual dementia café, where they read, discuss scripture and pray with and for people from all over the world.

Most of all she loves knowing she is giving back and helping others through her writing, speaking, radio hosting, and advocacy.

Teaming Up to Produce Great Results

Laurie and her husband work together to help her live a vibrant life. Here are their tips:

  • Have a designated place and time to escape to, with no phones or email, so you can talk, cry, and really express yourself.
  • Talk through the tough times. Notice when someone has a difficult day and figure out how you can improve things.
  • Work together to adapt beloved activities.  
  • Laugh as much as possible.
  • Be thankful for every good moment.

I know you’re going to want to know more about this remarkable woman and her tips for adapting to dementia.  Visit https://dementiadaze.com/about-me/

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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