Slowing the progression of dementia

brain exercise 1As I have mentioned many times since being diagnosed with dementia, I am living as if it is the Olympics of my life, and use a large number of non pharmacological and positive psychosocial interventions that have not only increased my sense of well being, they have, I believe, slowed the deterioration of dementia, and increased my ability to function in spite of dementia. There is emerging evidence this is possible, and although small studies, they are very encouraging. This following is a précis of one chapter in my book What the hell happened to my brain?, on this topic.

As Dr Ross Walker, a prominent Australian medical doctor says, even if there is no evidence based research about a patient’s cure, how can he not believe it, if they get well again! The health care sector as a whole, and the community remain sceptical of holistic or non-pharmacological and positive psychosocial interventions for dementia for dementia, and yet, most would believe in a cure via a ‘God miracle’.

Treating symptoms in the early stages of dementia, as the gateway to supporting disAbilities, not managing them in ways that restrict and hinder, and managing emotional changes with counselling and positive engagement, rather than treating the symptoms with drugs, have become paramount to my well being and perceived longevity.

However, negative attitudes and stereotypes about not only dementia, but also disAbility are alive and well, and the battle to overcome these continues for us all.

A non-pharmacological intervention is any intervention such as exercise or physical rehabilitation that does not involve drugs; it refers to therapy that does not involve drugs. A psychosocial intervention is a broad term used to describe different ways to support people to overcome challenges and maintain good mental health, and they also do not involve the use of medication.

Possibly for the first time a study has shown definitively that environmental factors are crucial in preventing dementia. Late last year British health charity Age UK reviewed academic studies and data and found that 76 percent of cognitive decline is down to lifestyle, including factors like level of education. The report called The Disconnected Mind (2014) has led to five steps being suggested to help prevent the development of dementia conditions, such as Alzheimer’s disease.

Regular physical exercise is the most important factor, as well as a healthy diet, not smoking and drinking in moderation. Avoiding or treating diabetes, high blood pressure and obesity is also crucial.

Read more about The Disconnected Mind research project that aims to discover how our thinking skills change with age, and what we can do to protect our cognitive health in later life, funded by Age UK.

Dale Bredesen (2014) in a study Reversal of cognitive decline: A novel therapeutic program done at the University of California in Los Angeles Ten memory-loss patients, some with brain-scan-confirmed patterns of Alzheimer’s, participated in a small trial called Metabolic Enhancement for Neuro Degeneration (MEND). Nine of the ten displayed subjective or objective improvement in cognition beginning within 3‐6 months, the only failure to improve being a patient with very late stage Alzheimer’s Disease.

Six of the patients had previously stopped working or were struggling with their jobs at the time of presentation, and all were able to return to work or continue working with improved performance. Improvements have been sustained, and currently the longest patient follow‐up is two and one‐half years from initial treatment, with sustained and noticeable improvement. These results suggest that a larger, more extensive trial of this therapeutic program is warranted. The results also suggest that, at least early in the course, cognitive decline may be driven in large part by metabolic processes.

The non pharmacological and positive psychosocial interventions I use for dementia:

The self prescribed interventions, now supported by my Neuro Physiotherapist and neurologist, fill up a lot of my days, and I consider them the ‘Olympics training of my life’. So far, they seem to be working.

  • Advocacy and activism
  • Studying
  • Phenomenology
  • Autoethnography
  • Neuroplasticity brain and body training
  • NeuroPhysiotherapy
  • Exercise 6 days/week when possible – walking, balance exercises, and stretching
  • Authentic Brain Injury Rehabilitation
  • Hydrotherapy
  • Pilates
  • Speech Pathology (why are these not in care plans for people with dementia?)
  • Occupational Therapy
  • Blogging
  • Creative writing
  • Poetry
  • Healthy nutrition – especially avoiding processed sugar
  • Supplements
  • Music therapy
  • Mind Mapping
  • Volunteering
  • Laughter and a lot of humour
  • Exploring my spiritual life
  • Love
  • Reading
  • Belief
  • Transcendental Meditation, 20 minutes, 3 times a day
  • Self Hypnosis for pain relief to prevent negative cognitive effects of medication
  • Family time with my husband and sons
  • Nurturing friendships
  • Social media
  • Personal resilience
  • Living every day as if it is my last, just in case it is

Other interventions could include things like art therapy, dancing, fishing, or any other usual recreational or social activity. Living your life, in the same way you did before diagnosis is perhaps, the best intervention for dementia of all! The one thing I would definitely be displaying a ‘challenging behaviour’ over would be if you made me play Bingo!!!

If I had been referred to the brain injury unit (in the early stages, dementia is not that different), I would have been proactively treated to live the very best life possible with the injury I have. Suggesting I disengage from my meaningful life, and take up activities other people thought might sustain my soul, was not only illogical, it was insulting. Initially it seemed I should join in, I should be grateful for the services people are trying so hard to provide, often with limited funding and resources. But I have found mostly I get no enjoyment from engaging in things that I was not interested in before (doh!!).

And even if engaging in the interventions I have listed do not provide me with a cure, they have provided me with a sense of longevity, the ability to live well.

In my case study sample of one, I have anecdotal evidence, and absolutely believe, these interventions have slowed down the progression of dementia.

 

25 thoughts on “Slowing the progression of dementia

  1. Pingback: Living Beyond Dementia™ can be difficult – Living Beyond Dementia™

  2. Pingback: Living Beyond Dementia | livingbeyonddementia

  3. Kate, a really great blog! Through your own examination of your self, it challenged me to review my own life and the “prescriptions” I have accepted to take. It is a timely blog for me and I will be sure to share it with those who surround me in partnership roles. Best… MB with big hugs.

  4. Hi Kate
    May I ask you a question? I know I could look it up, but I would rather get your perspective on it! What is phenomenology? I really like the sound of it, would be grateful if you could enlighten me:) Am currently studying Bach of Dementia Care with UTAS and your blog is most insightful and may I say it’s about bloody time people started looking further than their own back doors and realise many different people make up the world. So people like you who speak up (thank God for Richard Taylor, bless him) really need to be heard on wider spectrum. I ‘talk’ dementia at every opportunity and want everyone to realise the prevalence and impact it has on the people who live with it everyday. (Hope this wasn’t too full on).
    Coralie

    • I think, it focuses on my own consciousness, and my direct experience… I’ve always (almost!), been one to look at what I am doing, what I could do better, and trying to analyse ‘my own stuff’, not only to understand, but to improve myself, my behaviour, my thinking, my reactions, and my relationships. Auto ethnography, which I do more often, is a type of self-reflection and writing that explores my individual and unique personal experience, connects my own autobiographical story to a deeper meaning, or understanding. I find both very therapeutic!

  5. Such an important piece for professionals to read; particularly like your comment about what would have been offered to you had you sustained brain injury rather than a dementia diagnosis. I work with people at the later stages of the disease and think your ideas are still so valid the too.

  6. Pingback: National Dementia Strategies and Guidelines | Creating life with words: Inspiration, love and truth

  7. This is why you are here my friend! You are here to show others with Dementia that life can go on and be rewarding! When it was only big Pharma drugs available for so called help with Dementia it was disastrous. Now that natural/homeopathic medicine has entered the picture along with all kinds of new ways of dealing with illness, there is hope! I realize that this job you have been given is not one you would have chosen for yourself, but you wear it well Kate! You are invaluable and are contributing more to the new world than you can ever imagine. You bring the world HOPE! Bravo….Hugs and love….VK ❤

  8. Kate, your posts are authentic clarion calls in the wilderness! “Living your life, in the same way you did before diagnosis is perhaps, the best intervention for dementia of all!” This is so beautifully simple, so direct, and yet so elusive for so many. Thank you for being such an eloquent advocate.

    • Thanks Susan… my call to action, for many years now, has been exactly that: “support us to continue to live our pre diagnosis lives, for as long as possible”, and STOP dishing out Prescribed Disengagement which only leads to hopelessness and learned helplessness!

  9. I am so pleased that I have found you Kate. Your post today is just what I needed to clarify what might be the next steps to support my wife. Denial is something that has to be overcome and neither of us have been helped by the approach of professionals to my wife’s condition.

    • Sometimes, we go into the DENIAL bubble for a rest, it can be a relief even! But, I’m sad things have not changed since my diagnosis, and that neither of you have been helped by a more proactive and positive approach of professionals to your experience. Take care, and keep fighting… it is worth it, even if it only makes you feel like you are doing something positive. It may not be a sure, but these interventions have definitely helped me live as positively as possible. xx

  10. Hi Kate
    I found this particular book The Edge Effect by Eric. R. Braveman MD. to be a good fit for Eila. She has never been on medicines. I also have found it useful for myself. If you cannot find a copy I’ll send you mine.

  11. “In my case study sample of one, I have anecdotal evidence, and absolutely believe, these interventions have slowed down the progression of dementia.”

    Kate, in my experience a case study sample of one is often as valid as research with thousands of participants. Also, if it is valid for you, that’s the only thing that really matters. Further, belief has amazingly curative powers far beyond any medication that has ever been invented.

    Here’s what I know for sure: I observed the effects of antipsychotic medication on my mother and I saw its deleterious effects. After the fact, I investigated and researched and lo and behold, I found the academic and scientific research supported my case study sample of one. All of the things I have deserved are in fact true. I have been 100% bang on all the way along despite having no formal training, education, or medical “expertise.” in fact, medical experts need to catch up with me, not vice versa.

    In the words of Bob Dylan: “You don’t have to be a weatherman, to know which way the wind blows.”

    I’m so glad you’re out there making your voice heard. you rock. keep up the good work.

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