IMG_4559One would have to say, I am managing to live beyond dementia, and alongside of it, in spite of the dark days. Last week, my first book on dementia, titled What the Hell Happened to my Brain?: Living beyond dementia was officially released, as pictured here. I am thankful to Shibley Rahman for the image here, as I have not yet seen a physical copy of it.

Two days prior, I submitted another manuscript for a second book on dementia, which I have co-authored with Associate Professor Lee-Fay Low from Sydney University. So, I am not sitting in a corner crying all the time, or suffering all of the time, or not living a productive and meaningful life; my life continues to be busy and interesting.

This has not happened by chance, but has a lot to do with how I have approached living beyond dementia. By eventually refusing to accept the Prescribed Disengagement®™ dished out to everyone (yes, still), and by viewing, and then managing the symptoms of dementia as disAbilities requiring support and strategies to continue to function with, rather than stop functioning because of them, has been paramount.

Continuing to work really hard on my attitude perhaps has been the biggest benefits to living beyond dementia, as on the dark days when having dementia gets too hard, and these days do come along regularly (too often than I would like), it would be so much easier to sit in a corner and cry, and then to keep crying.  The PERMA principles do work, and I recommend to everyone, even those of you without dementia read Dr Martin Seligman’s book, Flourish: A Visionary New Understanding of Happiness and Well-being, which I have written about before.

This is an excerpt from my next book, Diagnosed with dementia: What next?

“In order to focus on quality of life and wellbeing, we need to think about the aspects of quality of life that we are dissatisfied with or want to improve. Martin Seligman, one of the pioneers of positive psychology has proposed the PERMA model for quality of life, this may help you in thinking about aspects of your life which you may want to devote energy to.

PERMA stands for

  • Positive emotions
  • Engagement
  • Relationships
  • Meaning
  • Achievement

Positive emotions – feeling good, happy, content, satisfied, joyous, peaceful. Research suggests that people who flourish psychologically experience a ratio of 3 positive emotions to every 1 negative emotion. This doesn’t mean that they don’t experience any negative emotion, or only a few negative emotions (they wouldn’t be human if they didn’t feel sadness or anger!), just that they experience three times as many positive emotions. So try and increase the number of positive emotions that you experience every day – do things that make you happy, that help you feel peaceful, that bring you joy or give you satisfaction.

You may want to laugh more, and do fun things. It is not a waste of time or money devoting resources to feeling good, allow yourself these pleasures, it’s good for you! If you find you are not laughing enough, then try joining a laughter club; they can be hilarious fun, and laughing is really good for you.

Engagement – being completely absorbed in activities or experiencing ‘flow’. This means that you are so engrossed in activity that time is irrelevant, as is stress and worry. It doesn’t matter what the activity is – it can be work, or play or an everyday task like sweeping the floor. The activity can also be challenging – like a tricky puzzle. Some people find meditation can help them reach this state, and others use mindfulness training. Any activity in which you are ‘in the moment’ can give you engagement. Importantly, it is best if it has inherent value to you as an individual, and you enjoy it, rather than doing something others think might sustain or amuse you.

Relationships – being authentically connected to others or having meaningful relationships is important; this means that you have intimate, ongoing relationships with people you can trust and rely on. This may mean someone that you can talk to, or someone that you can spend time with doing things together. Spend time nurturing your relationships with friends and family. People with dementia and their families consistently report friends and family members stop calling after a diagnosis, which therefore impacts their health and happiness.

Meaning – having a purpose in life. For many people having meaning involves the service of others – such as caring for your family, or contributing to the community. You may do this in small ways (e.g. making a small donation to charity) or big ways (becoming a dementia advocate like Kate Swaffer and speaking publically about your experiences with dementia and on behalf of others with dementia).

Many people volunteer, and you may find a program which will support your volunteering, or the person with dementia and care partner volunteering together. Some people may also find meaning through their spirituality – praying and being connected to God/s.

Achievement – a sense of accomplishment and success. This contributes to your self-confidence and self-worth. The accomplishments and successes could be big things (I built a boat!) or small things (I made a cake!). Many people like to set goals and working towards them though you don’t need to have explicitly set goals to feel that you’ve done something. If you’re no longer working, hobbies and pastimes can often be a source of accomplishment and success. For instance expressing yourself through art, music, dance or writing.

You’ll see that Prescribed Disengagement™® may result in reduction in the areas of meaning and achievement, and maybe also in relationships, which would mean a decrease in quality of life so it is worthwhile finding ways to engage more, rather than disengaging from your life.

For positive psychology resources including questionnaires to help you evaluate your quality of life domains, identify your personal strengths, and exercises shown by research to improve happiness please go to the website hosted by University of Pennsylvania and Dr Martin Seligman https://www.authentichappiness.sas.upenn.edu/content/about-us

7 thoughts on “#LivingBeyondDementia

  1. Just ordered your book. I look forward to reading it then sharing it with those in my caregiver support group, especially those who have carees with younger onset. I really think it will help them have open and honest discussions about their lives together as this part of their lives progresses. Thank you for writing so we all can learn. Deborah


  2. Thanks Kate. Again congratulations on your book. My copy will be here any day. Interesting reading about PERMA. I guess I had PERMAized Gregory’s life without realizing what I was doing. Sometimes relying on your emotions, intuition, and the sheer power of love pays off.


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