Maggie and Thomas recently interviewed Gary Glazner, founder and Executive Director of the Alzheimer's Poetry Project (APP). In this podcast, Gary explores the power of the arts in empowering individuals with a dementia diagnosis. Throughout the conversation, the group discusses the significance of creativity, ambiguity, expression, and sensory stimulation for these individuals and their families.
Established in 2013, the APP attempts "to improve the quality of life of people living with Alzheimer’s disease and related dementia by facilitating creative expression through poetry." APP was the recipient of the 2013, Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Award, as well as the 2012 MetLife Foundation Creativity and Aging in America Leadership Award, in the category of Community Engagement. In 2013, the National Endowment for the Arts listed the APP as a “best practice.”
Mr. Glazner is also the author of “Dementia Arts: Celebrating Creativity in Elder Care,” on Health Professionals Press, 2014. Additionally, his work has been published by Harper Collins, W.W. Norton and Salon.com. Per the APP website, programming has reached 26 states domestically, as well as Australia, Canada, England, Germany, Poland, and South Korea, serving over 35,000 people living with dementia.
This week's interview is with Nancy Schier Anzelmo, MSG, and Paula Hertel, MSW, co-founders of Connected Horse. Nancy and Paula are long-time professionals in the field of dementia care, and they recently turned their collective focus toward equine-guided workshops. According to their website, Connected Horse "offers human-animal connection, engagement and understanding" through innovative workshops that engage the individual, their caretaker, and the horse. This research-based workshop provides space for learning and engagement that the pair would otherwise not have in their home environment, opening both to a unique experience each time.
Fun Fact: Paula Hertel is also the Chair of the Board for the Presence Care Project, which we featured in our podcast interview with Ymkje Dioquino, MS, LMFT, the COO of the Presence Care Project.
By Thomas Baird LCSW, MDiv
In this space, we will regularly be sharing resources that we find may be helpful for caregivers. The content provided is intended for informational purposes only. The materials included do not constitute an endorsement of the authors or their materials by Awkward Story.
TimeSlips offers training, guidance and resources promoting what they call "Creative Meaningful Engagement." They acknowledge that communication can be difficult for family members, and claim to provide tools and framework to create positive engagement and interaction. This post is certainly not an endorsement or a critique of their program. I am posting this because the primary advertisement below does a fine job at capturing the role of imagination and exploration in our efforts to engage our loved ones with dementia. In my opinion, they correctly identify the barriers that occasionally get in our way when we communicate in a traditional fashion. Please see the video below, and feel free to explore their website here.
They also provide an example of a creative story telling session which captures the myriad responses one might receive when prompting elderly individuals with pictures.
Ymkje Dioquino, MS, LMFT is the Chief Operating Officer of the Presence Care Project in San Francisco, CA. She is also a Family Care Therapist at the Ray Dolby Brain Health Center in San Francisco, where she provides psycho-therapeutic services and support to persons with Dementia and their families and friends. She has practiced mindfulness since age 19 and started teaching Mindfulness Based Dementia Care (MBDC) in 2014. She was kind enough to speak with us concerning mindfulness practice and caregiving. Mindfulness practices can be an excellent, life-giving resource for caregivers feeling exhausted from their work. Please listen!
PK Beville is the founder of Second Wind Dreams and the creator of the Virtual Dementia Tour. In this interview, PK discusses the Virtual Dementia Tour and the research behind it. The VDT is a dementia sensitivity training designed to educate and empower caregivers by offering better understanding of their loved one's experience. The training involves a simulation of the dementia experience, as well as an opportunity to reflect on observations made during the simulation. In creating the Virtual Dementia Tour, PK was attempting to offer useful insight to individuals tasked with providing care to dementia patients. Here, she discusses the initial research that supported the development of the VDT, as well as the continued efforts to perfect the training.
Author: Thomas Baird LCSW, Mdiv
Quick reminder: In this space, we will regularly be writing about topics pertinent to dementia care, while focusing on articles, books, or online publications that have caught our attention. See our first post for more details.
From Loving Someone Who Has Dementia, by Pauline Boss, PhD:
"Although stressors may differ, each of you will have your own perceptions about your loved one's dementia and what that means to you. Whether I meet with individuals, couples, families, or groups of families, I always ask this question: 'What does this situation mean to you?' Rigid thinking blocks coping. Indeed, answers often vary within couples and families, but it's all right for family members to see the situation differently. When a loss remains unclear- as it does with dementia- people understandably disagree on what it means. I tell them to simply listen to each other's views." ( p. 49)
The author of this book is known for her remarkable work on the topic of "ambiguous loss," in which she makes sense of deep pain that hadn't previously been given a name. You can find some small tidbits on this topic HERE on our website, but you really should read directly from the source. Identifying one's pain can be truly cathartic, and grasping the ambiguity of an ugly situation can often allow one to strive less for finite answers, and attain some peace.
Dr. Pauline Boss goes on to explain that ambiguous loss will lead to diverse coping responses. While there is no "right" response, it is vital that loved ones do not think "rigidly" when interpreting others' perception of loss, because it limits their ability to communicate with one another and cope together.
During my first job in hospice, I worked with a large number of patients living with dementia. During this time, my direct supervisor continually stated that judgement has no place in our work, because individuals cope and live so diversely. It is easy to look at someone and say "They should visit their mother more," or "They obviously care more than the rest of their family." We all have this response at some point (even if we've been trained to have awareness of such responses!). However, these statements are mostly counterproductive. The experience of dementia symptoms is unique to each individual, and our responses to these symptoms are unique as well.
It will always be easy to get frustrated by other family members when a parent or loved one is suffering from dementia. You will each view the disease process differently, and this can lead to deep arguments regarding care. Family members can feel betrayed when others don't seem to care as much. In turn, those other family members may be offended by the implication that they do not care. Some may view the loved one as "entirely gone" and may flippantly dismiss efforts to bring higher quality of life. Others may view the afflicted loved one as having no problem whatsoever, and minimize symptoms. It is best to allow others to have their views, while encouraging education (for each of you). Seek out experts that can help. If the family conflict is disrupting care in some way, it is vital they they feel heard so that your loved one can experience some peace and continuity.
In this episode, we speak with Catherine Jonas, Certified Aging Life Care Manager, LMFT, who discusses the role of a geriatric care manager. We discuss the plight of individuals and families impacted by dementia, and their options. Please listen for some insight concerning geriatric care managers and their role in finding resources for families. Download below, or wherever you get your podcasts.
Thomas Baird LCSW
Maggie Dawson MSW