Written by Jill Cigliana, MSOT, OTR/L, program director at Memory Care Solutions
I am often asked, “Is there really quality time when living with dementia?” At my organization, Memory Care Home Solutions, we work with families to demonstrate that dementia is not an end to quality of life, but an opportunity to stay engaged and appreciate life in the present moment.
So how is this accomplished? Families may be overwhelmed by the abilities and skills they see slipping away from their loved one as a result of neurological changes. While grieving these losses, they find it challenging to recognize the many gifts, talents and abilities that remain. Social engagement and meaningful activity are important ingredients in healthy aging, and this holds true for people with dementia. Yet social and communication skills are eventually impaired through the progression of dementia, and friends and family members struggle to know how to include the person in conversation and activity.
We offer solutions to these barriers through an evidence-informed program by which social work and occupational therapy (OT) staff provide in-home service to individuals with dementia and their families and friends to maximize quality of life. Our team starts by identifying preserved abilities and modifying familiar hobbies and activities to fit within the current skill-set of the person with dementia. Our clients with dementia may not be able to initiate activities on their own or perform the skill at the level they once did, but this does not mean an end to engagement or pleasure.
Frannie is an excellent example of living out loud, despite a diagnosis of dementia. When Frannie started our 12-month caregiver intervention program, she was already in the moderate stage of dementia and spent the majority of each day in her bedroom, seated in a recliner, and did not engage with her family or want to leave the house. Frannie’s daughter-in-law lived in the same home, served as primary care partner, and was very frustrated with Frannie’s isolation and apparent lack of interest in activity.
Sheila Lynch, our OT working with the family, learned that Frannie formerly worked as a clown and loved arts and crafts. Although Frannie had not completed any craft projects in years, her daughter-in-law often did crafts at the kitchen table. Sheila re-introduced Frannie to her old familiar activities of balloon art, crafting and coloring and—through careful assessment—determined an effective approach to help her get started and stay engaged in these hobbies. Sheila also provided the family with training on how to cue and communicate with Frannie and simplify activities. Once the balloon pump was placed in Frannie’s hands, she went to work creating balloon animals as if her hands remembered every twist and turn. She soon joined her daughter-in-law at the kitchen table to participate in art projects and even left the house to work two community events as balloon artist, Frannie the Clown, at a health fair and a Memory Care Home Solutions fundraiser!
Tom is another client who exemplifies a life well-lived with dementia. Tom earned a living as a corporate executive and dedicated much of his life to service and volunteerism. When he began experiencing cognitive changes from a rare form of early-onset dementia, he and his wife Judy decided that early retirement was the logical next step. Judy was not ready to retire from her work, and planned to continue her employment until Tom’s care needs required her full-time attention.
During the course of Tom’s participation in our program, he had to retire his driver’s license as a result of disease progression. However, he was still looking for ways to stay engaged in community activities and with their social network. Jan Hanneke, a social worker on our team, guided Tom and Judy with strategies to educate friends and families on disease progression and activity ideas, engaged community resources including alternative transportation options, and identified volunteer opportunities that fit with Tom’s abilities. As a result, Tom has weekly dates to run errands with friends, uses transportation services so that he can still work-out at a community fitness center, and contributes to his community through volunteerism. As icing on the cake, Judy is able to continue working because Tom has planned activities and support throughout the week.
We serve more than 500 families through our 12-month intervention annually, at no charge to clients. With each of our clients we strive to:
- Educate families on dementia symptoms and progression,
- Help families simplify and create safety in the home setting,
- Activate community resources, and
- Equip caregivers with the skills to manage behavioral and functional changes at home.
Memory Care Home Solutions aims to extend and improve quality time at home and in the community for people with dementia and their families. If you would like to learn more about how to help a loved one who is caregiving or experiencing dementia age out loud, contact our team at Memory Care Home Solutions at (314) 645-6247.