Caregiver training and the gifts of dementia

Heather post

This week is National Rehabilitation Awareness Celebration week. For the occasion, I have asked an OT, PT, and SLP to blog about the goal of increasing our patients’ joy rather than just function. I believe this is something that makes our jobs special and something worth celebrating. Please share your story in the comments below to continue the conversation.

Today we hear from Heather Jeng, a speech-language pathologist.

Speech-language pathologists (SLPs) play a central role in the screening, assessment, diagnosis, and treatment of persons with dementia…Appropriate roles for SLPs include:

  • educating caregivers about possible communication difficulties and providing strategies to facilitate effective communication;
  • developing treatment plans for maintaining cognitive-communication and functional abilities at the highest level throughout the underlying disease course;
  • providing indirect intervention through the individual’s caregivers and environmental modification;
  • providing counseling to persons with dementia and their families regarding communication-related issues and providing information about the nature of dementia and its course;
  • serving as an integral member of an interdisciplinary team working with individuals with dementia and their families/caregivers.

Most common dementia-associated diseases are progressive in nature, and SLPs have an ethical responsibility to provide appropriate services that will benefit the individual and maximize cognitive-communication functioning at all stages of the disease process [emphasis mine].
(excerpted from: ASHA’s Dementia Practice Portal, Roles and Responsibilities)

“Ron” was a retired health care professional diagnosed with Alzheimer’s dementia, exhibiting characteristics of GDS Stage 5, progressing into Stage 6. A friendly gentleman with a smile for everyone, he had been admitted to the skilled nursing facility after an acute illness. The rehab director shared with the team that his family was considering long term care, as caring for him at home had become very demanding. OT, PT, and SLP all received eval/treatment orders for him.

Inspired by laughter

Ron’s wife “Sharon,” arrived at the SNF and greeted me resignedly after I had worked with him the first time. “How did he do for you?” looking like she expected to be told that there was nothing much we could do for him. Her eyes widened as I described the nice conversation Ron and I had had, including him telling me about how much he loved the Porsche he’d once owned, and that his favorite part of being on his college football team was “the cheerleaders…and the beer!” She teared up when I said that we’d enjoyed visiting and laughing. “I can’t remember the last time we laughed together,” she confessed. She shared that she and the rest of the family had “a really hard time” keeping a conversation going with Ron, and the end result was “we just don’t talk to him as much as we used to.” Her fear, she reported, was that the waning interaction was causing his dementia to progress faster.

This conversation was a crucial piece of Ron’s evaluation, allowing the rehab team to link Ron’s bodily functions & structures (what the dementia was doing to his brain) to his activities & participation in everyday life, per the World Health Organization’s International Classification of Functioning, Disability and Health. We continued our conversation into a more formal interview using the ICF checklist to document that Ron’s communicative capabilities were significantly impacted by contextual factors: loving and well-intentioned family caregivers who simply hadn’t been trained in facilitating satisfying conversation with their loved one. As a result, Ron was participating less and less in his family’s social life. Once Sharon realized that best practices for the communication disorders associated with dementia include training family and caregivers, she was excited – and on board.

Sharon participated regularly in Ron’s SLP sessions. At first, she was unsure what to do when her attempts at conversation didn’t elicit a response from Ron. She eagerly watched demonstrations and took home written examples of how to, for example, replace pronouns with people’s names or nouns, and to shorten her sentences, to compensate for Ron’s memory impairments. Soon she was catching herself mid-sentence, and eventually fluidly using these strategies, saying for example, “Katie moved into her dorm last week. Katie’s mom said Katie really likes college so far,” instead of “Katie moved into her dorm last week. Her mom said she really like college so far.” Short-term goals targeted topic maintenance, with Ron increasing the number of meaningful turns he took in conversation, and Sharon directly influencing that by asking questions and making comments that Ron was able to respond to meaningfully.

Family training to recognize ‘gifts’ of dementia

Early sessions focused on introducing and training these types of concrete strategies. As Sharon gained confidence using them, her interactions with Ron opened the door to the “bigger issues” in supporting a spouse through this disease. In My Past is Now My Future: A Practical Guide to Dementia Possible Care©, OTR Lanny Butler, and PT Kari Brizendine, wisely point out that “A ‘gift’ of dementia is the fact that by Stage 5 on the Global Deterioration Scale the individual no longer realizes he/she has memory loss…They no longer worry about their past, nor do they fear the future, they once again LIVE” (42). Sharon reported enjoying longer visits with Ron as she learned to focus on the timeless joys of life with her husband: taking him outside to soak in early fall sun, admiring the view, sharing a home-cooked treat that she’d brought in, and – importantly for another component of treatment – poring over photo albums.

Pam Britton Reese, in her wonderfully practical The Source for Alzheimer’s & Dementia, advises, “…the communication partner needs to realize the joy of reminiscence. Reminiscence (sometimes called recollection or remembrance) is when a person looks back at past events in his life…Persons with AD who can no longer discuss what happened yesterday or an hour ago due to short term memory loss can still take part in a conversation about events that happened long ago” (43). Using Michelle Bourgeois’s Memory Books and Other Graphic Cuing Systems, we collaborated on designing external memory aids specifically for Ron. This included modifying family photo albums that were already put together – labeling names, relationships, places – and creating from scratch a communication memory book for Ron’s frequent family visitors. Over time and with Sharon’s encouragement/insistence, family members elaborated on their visits in Ron’s notebook, providing concrete details (“We brought Danny Boy, the new puppy, to visit. Ron, you LOVED holding him!”) that made Ron smile and comment (“I sure did!”) when staff read the entries to him while helping him to bed.

Celebrating strengths

The staff’s remarks on how much more Ron was talking brings to mind Lanny Butler’s (2005) challenge for us to change our perception of people with dementia:

What we perceive to be true becomes our reality. If we believe that an individual who has dementia is unable to bathe, dress, feed, and toilet themselves, that will become your loved one’s reality, only because you have made it so for them. Often, we unknowingly take away these abilities, out of love, but also out of ignorance of what can be done. By doing for them, we have taken away their ability to participate in life and have taken away much joy we could have shared together (p. 1).

In Ron’s last session, Sharon echoed Mr. Butler’s sentiments when she concluded, “We didn’t know what to do. We just thought he couldn’t talk with us like he used to. But he could still! We just had to change what we were doing.”

References

  • Bourgeois, M. (2007). Memory Books and Other Graphic Cuing Systems: Practical Communication and Memory Aids for Adults with Dementia (1 edition.). Baltimore: Health Professions Pr.
  • Butler, L. & Brizendine, K. (2005). My Past Is Now My Future (1ST edition.). Lynchburg, Va.: Warwick House Publishing.
  • Dementia: Roles and Responsibilities. (n.d.). Retrieved September 13, 2014, from http://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935289&section=Roles_and_Responsibilities
    Reese, P. B. (2000). The Source for Alzheimer’s & Dementia. East Moline, IL: LinguiSystems.
  • Reisberg, B., Ferris, S. H., de Leon, M. J., & Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139(9), 1136–1139.
  • WHO | International Classification of Functioning, Disability and Health (ICF). (n.d.). Retrieved September 10, 2014, from http://www.who.int/classifications/icf/en/

Guest blogger bio:
Heather Jeng, M.A., CCC-SLP has worked primarily in skilled nursing/long-term care facilities. She graduated from Case Western Reserve University. She is currently pursuing a doctoral degree in Speech & Hearing Sciences at the University of Washington in Seattle, working in the Motor Speech & Cognition lab. Her main interests are Parkinson’s, TBI, dementia, and translational speech-language pathology/Practice-Based Evidence. She serves on ASHA SIG 15’s Continuing Education committee. She and her husband have two cats, though sometimes they wonder if the cats have them.

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Heather Jeng

Heather is a speech-language pathologist and doctoral student at the University of Washington. She is passionate about helping to find effective ways of putting evidence into practice in real-world clinical settings. She believes good relationships are the bedrock of good outcomes in health care.
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  • Sarah K

    I love this article, Rachel! I was taught by my mentor that people who are treated as communicators will often keep communicating meaningfully, though in ways different than before the disease or deficit struck.

    It’s encouraging to see how an SLP stepping in to assist the caregiver and family can result in such a positive change in relationships and decreased isolation for the affected individual.

    • Heather Jeng

      Thanks for the kind words, Sarah! Your mentor is so right. I firmly believe that part SLPs’ role is to help caregivers (whether family, staff, or both) recognize and respond to their loved one’s meaningful communication as the dementia progresses.

  • Jen B

    This is such a wonderful description of successful therapy and empowering the individual and their family members. It’s so interesting how perceived decline in function and social isolation can interact with the progression of dementia.

    • Heather Jeng

      I’m glad you enjoyed it, Jen!

      Yes, I think that so much of our behavior in the context of illness (not just dementia, but it’s a good example) cannot be attributed to the disease alone, but to others’ reactions and responses to us. Erving Goffman explores this idea in his book “Stigma: Notes on the Management of Spoiled Identity,” that anyone who is not perceived as “normal” by others (whether due to a physical impairment, an addiction, unconventional lifestyle, etc.) faces an identity crisis. Dementia throws even more of a wrench in the works than some disabilities because eventually the person’s cognitive decline hampers their self-advocacy. I really admire the therapists, nurses, family members, etc, who can prevent agitation that is often due to being treated as different or difficult, NOT the disease itself.