Caring for & Living with Dementia: Tips & Resources

Don’t Write Off People With Dementia

In many countries, including Singapore and the United States, people with dementia are often drugged, physically restrained, neglected, subject to emotional abuse, and at times physical abuse too as the disease progresses. In this World Dementia Month, I like to remember my late-grandparents who had dementia and still loved their coffee. I also like us to take an up close and personal look at people with dementia.

In my workshops, I have been advocating the strength-based approach when interacting with people with dementia – to focus on their existing strengths and to create opportunity to tap on those strengths. The strength-based approach was featured in my May 2017 article.  In July, when I chanced upon this article “Don’t write us off: People with dementia press for more rights — and respect” by Judith Graham, I was highly inspired by the cause and work of Dementia Alliance International (DAI), so much so that I will like to (one day) gather enough resources to form a Singapore Chapter of it. I felt that DAI is a wonderful way of community empowerment – empowering the community of people with dementia instead of writing them off and taking away their rights to equal opportunity, decision-making, happiness, respect and basic humanity upon their diagnosis with dementia. But a Singapore Chapter of DAI will take time and resources. In the meantime, I like to share with you the parts of the article that had inspired me and intrigued me.

                            “See us as whole people, not our diseases or disabilities,”

                                                                                             Professor Peter Mittler, an 86-year-old psychologist.

In 2006, Professor Peter Mittler was diagnosed with mild Alzheimer disease upon noticing an increasing memory lapses in his day-to-day life. Well, it seems that dementia is as fair as it’s friend, the infamous cancer. They pick and choose anyone they want, and nobody can be spared. You may be highly successful, and highly cognitively intelligent at work. You may be a psychologist, a professor, a musician, a housewife, etc… You may one day end up with the highly stigmatizing diagnosis: Dementia. Once given that diagnosis, the society almost treats you as if it’s game over for you. This is what Kate Swaffer referred to as the “prescribed disengagement”. When Kate was diagnosed with frontotemporal dementia in her late 40s, she was advised to “go home and get her affairs in order”. “Stop working, go home, and get your affairs in order, and become familiar with care for the aged” was the advice given with the diagnosis; and her husband was also forewarned that he might have to stop working soon to care for her. It was depressing to receive such advice alongside with the diagnosis of dementia. However, Kate’s seemingly hopeless life took a u-turn when she read Richard Taylor’s book “Alzheimer’s From the Inside Out”. Richard is a psychologist being diagnosed with early-stage Alzheimer disease. Richard’s book has inspired her so much that today, Kate has authored two books, including “What the Hell Happened to My Brain: Living Beyond Dementia,” and a blog. Kate experiences various symptoms of dementia which fluctuates, including difficulty processing information and short-term memory loss, similar to most people with dementia. But with efforts, Kate found ways to cope and even completed her degree and graduate studies (with the support that she received from her professors and classmates).

Kate, Peter and other DAI activists want to reframe dementia as a type of neurodiversity like dyslexia, autistic spectrum, tourette syndrome, attention deficit hyperactivity disorder which cause them to experience and interact with the world in a widely misunderstood manner that is different from the society’s ‘norm’.  

                        “We are people, not patients” and “we object to constantly being referred to as ‘sufferers,”

                                                                                                                         Professor Mittler said in one of his speeches in November 2016

DAI is advocating these messages:

To not write off people with dementia, but to recognize them as “fully human people whose brains are impaired”. To include them in conversations regarding their future and “to understand their needs from their perspective”,  instead of making decisions for them. Let them have a say on public policy. Provide them with adequate care and respect their fundamental humanity. Instead of institutionalising them, help them participate in community activities. They are not “just a medical problem”.

And there have been too many examples that demonstrate that if the society is to respect them as an equal human being and help them participate in community activities while providing adequate care, these individuals with dementia can still live to their maximum potential just like any other with neurodiversity, or just like any one of us.

Recently, I watched the movie, Buena Vista Social Club (https://www.youtube.com/watch?v=uOunFp0fkJI), which reinforced the above-mentioned. According to Erlich & Kinzer (2009), the pianist of Buena Vista Social Club, Ruben Gonzalez, had early stage dementia, yet when he’s seated at the piano, as seen in the movie his fingers just moved magically and beautifully across the keyboard, making the most lovely cuban music, known as the son.  This is supported by an article by Denselow in the Guardian stating “While his short-term memory was already erratic, a premonition of the cerebral sclerosis that eventually stopped him touring, his long-term memory, like his playing, remained unforgettably rich.”

Hence, in this World Dementia Month, let us reflect and remind ourselves not to write people off just because they have been diagnosed with dementia. May we focus on their existing strengths and create opportunity to tap on those strengths so that they are still able to be part of the community and to participate in community activities, just like the Buena Vista Social Club; facilitating them in regaining purpose and joy in their lives, exactly like what we have been trying to do for others with other forms of neurodiversity, for the very simple reason that THEY ARE AS MUCH A HUMAN AS YOU AND I.

References:

  1. Buena Vista Social Club. https://www.youtube.com/watch?v=uOunFp0fkJI accessed on 28 Aug 2017
  2. Dementia Alliance International. https://www.dementiaallianceinternational.org accessed on 29 Aug 2017
  3. Denselow, R. (2003) Ruben González: Legendary Cuban pianist who found late fame with the Buena Vista Social Club.  https://www.theguardian.com/news/2003/dec/10/guardianobituaries.artsobituaries accessed on 28 Aug 2017
  4. Erlich, R. & Kinzer, S. (2009) Dateline Havana: The Real Story of Us Policy and the Future of Cuba. USA: Paradigm Publishers.
  5. GRAHAM, J. (2017) Don’t write us off: People with dementia press for more rights — and respect. https://www.statnews.com/2017/03/10/dementia-human-rights/ accessed on 28 Aug 2017
  6. Source of Ruben’s picture https://www.youtube.com/watch?v=zVXLCaIApYc accessed on 29 Aug 2017