Cafe Classic: Early-Onset Alzheimer's and the Dignity of Work

Editor's Note: Recent research on early-onset Alzheimer's and what my mom's own dementia journey taught me about work.

Let's file this one under the category of total rewards.  I think it touches every element of the reward portfolio and speaks to the core of the employment relationship - the notion of work itself.

A U.K. study titled "Managing Employees with Dementia: A Systematic Review" was published not long ago in the journal Occupational Medicine.  The research draws on 44 papers and articles which explore the management of employees who developed dementia between 30 and 65 years of age - referred to as "early onset" or "working age" dementia.  People who develop dementia during these years are often employed when the symptoms first appear and can experience difficulties at work for several years before a diagnosis is reached.

Most of us have been exposed to dementia - with parents, grandparents, etc. impacted by Alzheimer's or another form of the condition.  Those of us who have experienced a loved one fall victim know first hand the devastation that the diagnosis, the symptoms and the damage that its eventual progression brings. It's hard to imagine facing this as a younger, working adult. 

As study co-author Dr. Richard Heron says:

There remains much stigma around mental health, and particularly the 'D' word, Dementia, which is perhaps becoming as feared as the 'C' word, cancer was. 

With early detection and anticipation of more effective treatments on the orizon, a diagnosis of early dementia should not mean the immediate end of a working life.  People will have a range of capabilities that do not change overnight once a diagnosis is made.  They will have differing reserves to draw on, and differing home and work demands to take into consideration.  With the right support, care and occupational advice, many will be able to continue safe, healthy and productive employment, well beyond their diagnosis.

The authors take a stab at a list of suggested practices for employers, which range from risk assessment to identifying and implementing reasonable accommodations.

For me, the underlying imperative in this topic is the importance of work and of being productive in our lives as human beings.  And the desolation that can come from the loss of responsibility.  This is an often unacknowledged thread that runs through much of what we in the rewards field (and in the HR profession overall) do in our own work.  The person who brought this lesson home for me most clearly was my mother.

My mom grew up with hard work.  As the oldest daughter in a farm family of ten, she was pulled out of school and put to work in the field when her older brothers left to join the armed services.  She went on later in life, with five children of her own, to return to school and earn the GED she was denied as a younger woman.  She worked many years at a local garden center (she had a magical way with blooms) and for a women's clothing store that offered a great employee discount (with four teenage daughters, you can easily see why this was a good idea).  She washed floors and baked cookies after we went to bed; I honestly don't know when the woman ever slept.

It's been more than five years now since my mom's death, which was preceeded by at least a five-year struggle with Alzheimer's.  Although her onset of the disease was certainly late in life, I thought a lot about her as I read and reflected on this study.  She spent her final year in an exceptional memory care facility with excellent staff.  When we first arrived with her, as part of our orientation, the staff asked about what she enjoyed doing.  Did she like puzzles, listening to music, watching any particular TV shows?  Our advice: Put her to work, give her responsibility for whatever chores she can do, and she will be happy.  She became the queen of laundry folding - and when I visited, we would fold towels and sheets together (with her correcting my sloppy corners, just as she did when I was young). 

The lesson I had reinforced from my mom's struggle with Alzheimer's: There is no substitute for the dignity and satisfaction of doing work - and doing it well.

In our workplaces and in our economic and political spheres, I hope we never lose sight of this.

What lessons have you learned from your experiences with loved ones and dementia?  Have any of your organizations had to address and create solutions for employees with working age dementia?

Ann Bares is the Founder and Editor of Compensation Café,  Author of Compensation Force and Partner at Altura Consulting Group LLC, where she provides compensation consulting and survey administration services to a wide range of client organizations.  She earned her M.B.A. at Northwestern University’s Kellogg School and enjoys hiking, reading and hanging out with family in any spare time.

Image courtesy of openaccessgovernment.org

Comments

[Tea Time]

Great post i must say and thanks for the information. Education is definitely a sticky subject. However, is still among the leading topics of our time. I appreciate your post and look forward to more.

[Adam]

Aweosme post.