Dementia: Personal Experience

 

Image by Abhijit Bhaduri
via Creative Commons 

When I was pursuing my master's program in gerontology between 2010 and 2013, I decided to focus on issue of cognition and aging. My understanding of age-related causes of aging was very academic. Yes, I did volunteer at a multi-level care center for five years, but that pales in comparison with having a relative living with significant cognitive challenges. 

Critical Age Theory: Book Review

Published 29 May 2022.

I have been reading widely about aging since 2010.  

A few books take a comprehensive view of the aging process, titles that I often recommend to people who are not gerontologists so that they can get The Big Picture. 

Ten Books: An Essential Library on Aging

I have found another title to add to my list of must reads about aging. 

Mario D. Garrett, PhD has written a jeremiad of sorts about the many institutions that prey on older adults, capitalizing on the vulnerability many face in late life. 

To create a context, I suggest readers first watch the 2020 film, I Care A Lot, directed by J. Blakeson and starring Rosamund Pike. I watched the film the year it was released and found it interesting as an exaggeration, a dramatization of the state of eldercare in the 21st Century. 

Two years after viewing that film, Garrett's book has me rethinking I Care a Lot as being less a niche genre black satirical comedy thriller and more from the genre "based on true events."  I had already planned on mentioning this film in my review before I saw that Garrett references I Care A Lot (2020) himself.   

Watch the film, but if you going to choose one, read Garrett's book.  

Critical Age Theory: Profiteering From the Final Stages of Life (2022) describes the ways for-profit companies and even the government and non-profits fail older adults when they are the most frail of mind, body, and finances. 

I teach college courses on aging (gerontology), and this book would work well to alert my students to the unethical practices that are inherent in the system and challenging for individuals to change at their level. 

The chapters are as follows (with a staccato summary/response for each chapter). 

(Here is my Goodreads review, which I wrote chapter-by-chapter as I read. It's grittier than my blog review.) 

Introduction: This sets the tone with Garrett as the lone voice in the wilderness, asking people to look at the larger systems controlling aging and to spend less time blaming elders and their family caregivers and less time wagging fingers at those paid to offer support directly to older adults.  The problem goes higher up, and it goes deep into the structures of 21st century power structures.  Here is one example that gestures to system rather than the individual as the root problem:

"We make it easy for . . . commercial practices to continue as we tend to see only individuals that commit fraud or harm. As with elder abuse, we personalize the interaction. however, in most cases, the institutional make up--what we euphemistically refer to as their business model, or business culture--determines how individual workers behave within an agency. Since the business model dictates workers' hours, duties, and responsibilities, it is logical to examine the business model being used" (9). 

(I do not remember Garrett using the word "hegemony," but academics use this--and other words--to study the network of power that is pervasive and difficult to combat.)

1. Drugs: Drugs are often improperly prescribed and almost always overpriced.  

*Each chapter ends with a "Playbook" that unearths the game plan that seems to drive decisions based on profitability over patient-centered / customer-centered / client-centered service. One of the items from the "Playbook" on the chapter "Drugs" is this: "Price medications on the basis of what people can afford rather than what they cost to develop and manufacture" (37). 

     

Supernova: Film Review

 

US release 29 January 2021.

Director Harry McQueen offers Supernova (2020), a quiet film with a heavy topic: how couples respond to a diagnosis of early onset dementia. 

Colin Firth plays Sam opposite Stanley Tucci playing Tusker. The latter is the one with early onset dementia, but clearly such a diagnosis affects Sam as well. 

These two have been a couple for two decades, and now they are taking a road trip through the Lake District of England in a camper van. They are en route to a piano concert featuring Sam. Tusker writes novels, and he has brought some notebooks with him so that he can make progress on his last novel before his memory corrupts any further. 

The film has three sections: establishing their dynamic, conversations with members of Sam's family, and more intense conversations between Sam and Tusker. 

The Father: Film Review

Released 27 Jan 2020. 

Director Florian Zeller delivers up an atypical perspective in The Father (2020) for a film that depicts dementia.

By doing so, he actually presents a perspective more typical than other films about memory challenges. 

The Father is one of about thirty "dementia films" that I've viewed in the last decade.  

Films about Dementia

I find Anthony Hopkins' portrayal (of a character also named Anthony) to be one of the most realistic. 

The majority of the film shows Anthony in conversation with a handful of care partners: family members--such as his daughter Anne played by Olivia Coleman--or those hired to care for him.  

Virtual MAIA Every Thur in August 2020

Every Thursday in August 2020 at 12 noon Central

For a dozen years, the Mid-American Institute on Aging & Wellness has hosted keynote and concurrent sessions on an array of topics to promote health and wellness across the lifespan.

MAIA secured a fantastic line up of speakers this year who agreed to present online due to the constraints presented by the COVID-19 pandemic.

This is a great introduction to MAIA
because registration is FREE
for many attendees this year. 

VIDEO Introduction (from 7/14/2020 runtime 4:30 min) 

Click the blue word "VIDEO" above
to play the video

2019 MAIA Review: Day Two

Highlights from MAIA on Friday, August 9, 2019.

I have a few notes that I haven't shared from the Twelfth Annual Mid-American Institute on Aging and Wellness (MAIA) held on the campus of University of Southern Indiana.

Attendees include members of the tristate region's healthcare organizations (including USI students, faculty, and staff member), family care partners (formerly called "caregivers"), and individuals of all ages from IN, KY, IL and beyond seeking to improve the quality of their life by learning more about wellness across the lifespan.

Many healthcare professionals attending earn CME credits (continuing medical education), but a good portion of those present are not healthcare professionals; they are community members who are pro-active about their physical, financial, social, and emotional health.

These are details about the second day of this event, which took place on Friday, August 9, 2019. Find details about the first day, Thursday August 8th, by following this link.

Ron Weatherford in USI's Carter Hall

As people made there way to Carter Hall, they had the opportunity to practice a few minutes of Tai Chi as directed by Ron Weatherford.

Published in 2014 and 2017.

The morning keynote address was delivered by journalist and author Greg O'Brien.

He gave an engaging speech about living with Younger-Onset Dementia. previously called Early Onset Dementia (EOD).

His work as a journalist gives him the ability to articulate a lot of emotions and concepts about living with this disease. His family heritage and personality gives him the ability to do so with a lot of wit and wisdom; he comes from a long line of animated storytellers.

For those seeking to learn more about O'Brien, he has a well-regarded book, On Pluto, which has been republished in 2017 in an expanded edition.

What They Had: Film Review

21 January 2018.

It took me two months to watch this What They Had (2018).

The film was neither too long nor too boring.

Quite the contrary.

It was very engaging, but it was also challenging.

Written and directed by Elizabeth Chomko, What They Had conveys the complexities a family faces when someone is living with dementia, the most prevalent form being Alzheimer's Disease.

This 2018 film (which in the US primarily showed at film festivals, such as Sundance) focuses on one family's response to Ruth, played by Blythe Danner.

Ruth is the matriarch and former nurse whose memory problems lead to her wandering--during a snow storm--from her Chicago home, which she shares with her husband, Norbert (played by Robert Forster). 

This is frightening enough when people wander in nice weather. However, Ruth has disappeared into the city during a snow storm.

This becomes a catalyst for the son, Nick, played by Michael Shannon, to put in motion a solution for his parents' age-related challenges. Nick does what he thinks is the most obvious, practical, and objective response to advanced age: place mother in an assisted living center.

Their father, Norbert, disagrees--vehemently.

2018 MAIA Keynote and Plenary Speakers

MAIA 11th anniversary swag bag, program, and tee.

What Is MAIA?

For the last eleven years, the University of Southern Indiana in partnership with Southwestern Indiana Council on Aging & MORE! (the local Area Agency on Aging) has organized an inter-professional gerontology conference. This year, the conference ran August 9th and 10th with a pre-conference workshop on the 8th.

2019 MAIA Preview

Located in Evansville, Indiana, this two-day event offers keynote and plenary speakers with national--if not international recognition. In addition, dozens of other presenters also offer great information about promoting wellness across the entire life span. 

The participants are local health care workers, university students, and members of the broader Tristate (IN, IL, KY) community.

Many healthcare professionals attending earn CME credits (continuing medical education), but a good portion of those present are not healthcare professionals; they are community members who are pro-active about their physical, financial, social, and emotional health.

Last week was the third time that I attended the Mid-America Institute on Aging and Wellness (MAIA). However, it was my first time serving as one of the organizers as a member of the Blue Shirts team. 

This gave me the opportunity to see the amount of work that goes on behind the scenes. I'm grateful for all that USI, SWIRCA, the sponsors, vendors, and all the presenters do in order to make this event informative and exhilarating. 

By looking at the program ahead of time, I had a chance to read more about all the presenters before they arrived. However, with six concurrent sessions happening three times a day for two days, it was impossible for me to attend all 36 sessions!

Let me first report some key details about the keynote and plenary speakers. (Details about the 2018 concurrent sessions are now available here.)

Still Dreaming: Film Review

Released on DVD April 19, 2015.

PBS will air this documentary starting April 14, 2018. Check your local listings for show times. 

Shakespeare's plays are rich with meaning, which allows people from every historical era to emphasize different aspects in each play.

Hamlet performed in 1800 looks very different from Hamlet performed in 2000.

But Shakespeare's plays not only change when performed in various eras of time. They change when performed by actors of various ages.

Viewers have the opportunity to witness this phenomenon, thanks to Filmmakers Jilann Spitzmiller and Hank Rogerson who facilitate a unique production of A Midsummer's Night Dream with the making of their documentary Still Dreaming (2014).

The documentary is set in The Lillian Booth Actors Home, just outside of Manhattan. The residents are older adults who worked as Broadway performers--actors, singers, dancers, musicians, etc.

Ben Steinfield and Noah Brody are thirtysomething co-directors who work with residents of the assisted living campus of the home. Over the course of the documentary, we see them cast about a dozen residents. They spend six weeks rehearsing before perform this romantic comedy for staff, fellow residents, and family members.

Even though the leads are usually played by twentysomethings, the play's themes of identity, illusion vs. reality, desire, and autonomy resonate with the mature actors.

Knocking on Heaven's Door: Book Review

Published September 10, 2013.

Journalist Katy Butler supported her aging parents through two very different trajectories in their final years.

She describes their final years in her 2013 book Knocking on Heaven's Door: The Path to a Better Way of Death.

Her father, Jeffrey, experienced a stroke and then a series of medical problems that deteriorated his quality of life. Most notably, he had cognitive problems due to vascular dementia.

However, the bulk of Butler's book addresses the decision to give her father a pacemaker so that he could withstand an operation to repair a hernia.

In the years that followed, Butler and her mother, Valerie, regretted that decision. When his memory failed, his personality changed, and his mobility faltered, they tried to have Jeffrey's pacemaker switched off. However, the ethics of that decision was questioned repeatedly.

After watching Jeffrey's life prolonged well past a quality of life acceptable to him and his loved ones, Valerie chose to reject medical interventions when she started experiencing serious heart problems just a couple of years after the death of her husband.

Instead, Valerie chose palliative care and died without having to spend her last months or years in and out of hospitals and under the care of family or paid caregivers.

Healing Dementia: Book Review

Published in 2017.

Approaches to dementia range from medical models to health care models. Every once and a while, I find people who respond primarily through the emotions.  This is the case for dementia advocate Kyrié Carpenter.

Teepa Snow at MAIA 2017

Snow explaining unmet needs at MAIA 2017.

I spent the bulk of today attending a pre-conference workshop on dementia care.

For the past year, I have been teaching gerontology classes part time in the College of Nursing and Heath Professions at University of Southern Indiana in Evansville, Indiana.

Each August, the university hosts an aging conference sponsored by local agencies and businesses that support healthy aging.

Read more about the Mid-American Institute on Aging & Wellness (MAIA) here.

The two-day conference is packed with speakers covering an array of topics about healthy aging and elder care.

APA Using NCD not Dementia

Photo by Keoni Cabral.

If the Sapir-Whorft theory is to be believed, the language we use shapes our reality.

As a gerontologist, I am interested in the labels that people use to describe older adults, since language can filter how we see people and treat people. Sometimes these filters are ageist.

Over time, people have used an array of terms to describe neurological and cognitive problems as experienced by older adults.

Some might remember that the word "senile" was prevalent in the early 20th century.

In the last few decades, people have switched to using the word "dementia," but it's very broad. It's used to describe an array of neurological or cognitive problems.

In addition to being too broad of a term, the word "dementia" is related to the word "demented," which means "insane."  For these and other reasons, the American Psychological Association (APA) scrutinized the origins of "dementia"-- which original meaning is tied to "madness" -- and in 2013 introduced a new term in the newest edition of DSM-V, their diagnostic manual.

Neurocognitive Disorders (NCD)

Read APA's 2013 announcement of this new term and its relationship to dementia. 

A Dignified Life: Book Review

Published 21 September 2012.

In 2012, dementia care experts Virginia Bell M.S.W. and David Troxel M.P.H. published a revised and expanded edition of their 2002 book of the same title: A Dignified Life: Best Friends™ to Alzhemier's Care. 

By incorporating new research, more types of dementias, and additional stories about people living with dementia, Bell and Troxel build upon their already solid foundation of informed care. 

[I was provided a free copy of the book in exchange for a fair and honest review.]

Their guide for care partners (a term that replaces caregivers) is rich with ideas, accessible and a conveys a tone of compassion and respect for people responding to the enormous challenges of living with dementia.  

Their Best Friends™ Approach includes the following (as adapted from a list of traits in their "Introduction" on pp. 2-4):

Diminished Capacity: Film Review

Released 2008.

I viewed Diminished Capacity (2008) a few years ago, but I'm revisiting it today, given that the "MacGuffin" or plot device for this film is a 1908 Chicago Cubs baseball card.

[Listen to Alfred Hitchcock explain the film term "MacGuffin."]

This quiet little film featuring Alan Alda, Matthew Broderick and Virginia Madsen.  The title refers to the cognition problems experienced by two of the three main characters.

Broderick plays Cooper, a Chicago newspaper reporter who experiences a traumatic brain injury by being too close to a bar fight.

Alda plays Cooper's Uncle Rollie, a mature man who is living with some form of neuro-degenerative disease, probably Alzheimer's Disease.  The movie poster gestures to one of Rollie's odd habits--his method of creating poetry by having fish tug on fishing lines attached to typewriter keys.

Madsen plays Charlotte a recently divorced woman who still lives in Broderick's home town in rural Missouri, the same town where Uncle Rollie lives.  She's raising a tween son.

Connecting in the Land of Dementia: Book Review

Published 13 September 2016.

Living with dementia presents a host of challenges.

While there are a number of tips available for family members, the most transformative tips all come from this common ideal:

Show love and respect for people living with dementia while maintaining a meaningful connection.

Connecting in the Land of Dementiia: Creative Activities to Explore Together offers specific, practical suggestions for making this ideal a reality.

Author Deborah Shouse has an earlier book that shares the journey she and her mother took while finding ways to connect after her mother's diagnosis of dementia*.

[See this post about the terminology change favoring Neurocognitive Disorder over dementia.]

I've read more than two dozen books about family caregivers, and Shouse's is one of the most positive and hopeful paths through the caregiving partnership.

After reading Living in the Land of Dementia (2013), I was eager to see how she has extended her work in a second book.

[I received a copy of this book in exchange for a fair and honest review.]

In the intervening years, Shouse has met with a variety of people within the United States and beyond, all exploring creative ways to keep people with dementia engaged in meaningful relationships and activities. Her new book makes reference to many practitioners and researchers.

I had the opportunity to meet the author and her partner Ron when they did a performance art activity at a local library in south Central Kansas.  They are intelligent, creative, and caring people. Her book conveys these same virtues.

Somebody Stole My Iron: Book Review

Published 17 January 2014.

Supporting one parent through a chronic illness is challenging enough. Author Vicki Tapia chronicles her experience supporting her father through Parkinson's Disease and her mother through Alzheimer's Disease.

Her book is called Somebody Stole My Iron: A Family Memoir of Dementia, published 17 January 2014, available on Amazon.

Tapia's parents are having more and more trouble managing the basics. As the only child living locally to her parents, Tapia helps her parents through a couple of moves--from their home to assisted living to a skilled nursing center.

Most of her memoir discusses her mother's problems with memory, mobility, language and self-care.  Her father is a quiet man who rarely complains. Her mother is more outspoken, determined and demanding.

It's difficult to walk the line between respecting her mother's desire for independence and her mother's need for safety.

Tapia learns again and again that her mother's can present an illusion of capability that exceeds the reality.

Caring for a Husband with Dementia: Book Review

Published 17 March 2015.

Every disease makes life more difficult. However, dementia presents a number of challenges that alter health, identity and relationships.

Angela G. Gentile, MSW, RSW, brings over 25 years experience to the pages of her new book, Caring for a Husband with Dementia: The Ultimate Survival Guide (2015).

(I have received a free copy of her book in exchange for a fair and honest review.)

Not only does she loan her professional experience, she includes knowledge gleaned from working closely with eight women whose husbands received a diagnosis of dementia (Alzheimer's Disease and vascular dementia being the most prevalent forms).

The result is a guide book that has very practical helps while also conveying a tone of compassion.

It's evident that she is strongly visualizing the reader as she writes. For example, most chapters contain space for exploring feelings, conceptualizing the journey and making goals for how to best respond.

Gentile's book is organized into the following sections and chapters:

I'll Be Me: Film Review

Released 24 October 2014.

After experiencing some difficulty with his memory for several years, Glen Campbell received a formal diagnosis of Alzheimer's Disease in 2011 at age 75.

About the same time as this diagnosis, Glen Campbell and his wife, Kim Campbell, invited a camera crew to film "behind the scenes."

The resulting documentary--Glen Campbell: I'll Be Me (2014)--is a tribute to this musical legend and an honest-yet-dignified view of the challenges of living with Alzheimer's Disease.

The documentary is filmed over about a year and a half; however, clips of performances over several decades are included as well.

The resulting documentary is a blend between a celebration Campbell's career and an exploration of how Alzheimer's affects a person's day-to-day life.

The Theft of Memory: Book Review

Published 2 June 2015.

Jonathan Kozol, teacher, writer and activist for education reform, writes a compelling memoir about the years he and his father, Dr. Harry Kozol, spent together from 1994 to 2008.

The Theft of Memory: Losing My Father, One Day at a Time (2015) starts with the onset of Dr. Kozol's symptoms of Alzheimer's Disease and continue until his death at 102.

This dementia memoir distinguishes itself by being very academic in its approach.  

Both father and son are nationally recognized in their fields. Because this memoir reflects their professions, I suspect that readers will either love it or find it a bit too cerebral.