Tag Archives: post traumatic growth

Growing through trauma : living with dementia

On Friday I was fortunate enough to hear Professor Stephen Joseph talk about Post Traumatic Growth  at the AGM of the Scottish Branch of the British Psychological Society. Professor Joseph outlined how people can grow  from, not just survive, disasters. As I sat and thought about his talk, it made me realise that in many ways I see a diagnosis of dementia as a disaster. Given the family history of dementias of different kinds, it may well be something I too have to live with, and it fills me with fear.  What does it take to see beyond a diagnosis like that to a quality life ahead?

Disasters needn’t just be about earthquakes or plane crashes, our own personal disasters bring profound loss , unexpectedly changing our lives forever.  Most of us in the UK don’t expect to lose a child or have a serious health condition or an accident. Most of us are fortunate enough to live lives where we don’t expect to be the victims of crime, never mind being repeat victims. Traumatic events can turn our worlds and our assumptions about how things work upside down.

Professor Joseph’s research  showed that people can do more than just survive disasters. Even after extremely traumatic experiences, we can experience growth.  His study showed that 3 years after the Herald of Free Enterprise disaster,  whilst 46 per cent said that their life view had changed for the worse, 43 per cent of survivors said their view of life had changed for the better since the experience. Psychological growth has been found after other types of disasters too. Using a range of tools, Professor Joseph found that post disaster, some people reported growth in their self perception, their life perspective and their relationships.  Survivors spoke of appreciating their relationships, valuing being alive, appreciating every day and its simple pleasures. This isn’t about happiness or some people having a ‘glass half full’ cheery optimistic personality, nor is it about pulling themselves together. Psychological growth after trauma is something much more profound. It’s about psychological well being; a greater sense of autonomy and mastery, personal growth, positive relationships, self acceptance and having a purpose or meaning for life.

Professor Joseph said that psychological growth is the outcome of our struggle to find a meaning for what has happened,  a deeply human attribute.  Disasters smash apart our carefully constructed assumptions and expectations of life  that we’ve built over years of experience and learning.  It’s no wonder we are stressed, confused, angry, frightened at the void left behind after a disaster.

The logic behind Post Traumatic Growth connects with one of psychology’s most powerful and well known theoretical understandings of what it means to be human – Maslow’s hierarchy of needs. Maslow lists a range of needs starting from basic survival – to reaching the highest levels of human functioning. We  humans are intrinsically motivated to make sense of our worlds and need to fill the disaster-shaped void.  Client centred, person centred, humanistic, positive approaches to psychology all work from the basis that people are intrinsically motivated towards growth, to greater functioning, mastery and autonomy.  Daniel Pink in his research on what motivates us at work lists very similar factors – what drives us in our work is a sense of competence, autonomy  and relatedness. When these 3 needs are satisfied people are motivated, productive and happy at work.

Talking therapies like counselling help people re build their psychological worlds and create new meanings and this can promote psychological growth. There is a cognitive and an emotional component to growth. Professor Joseph found that emotional expression can be the bridge between distress and post traumatic growth. People need to express and make sense of their emotional responses to events. And we need to pay attention to our thoughts too, not simply hope it will all go away. What helps is deliberate rumination – consciously choosing to think about what’s happened actively and constructively rather than avoiding thoughts which become intrusive, uncontrollable and frightening. Psychological interventions, good quality therapeutic interventions, can help build new ways of thinking and rebuild our sense of autonomy and belonging.

I know that my fear of dementia comes partly through the experience of caring for my parents. The most traumatic experiences I’ve had over recent years have been caring for my parents with Parkinson’s and Alzheimer’s disease. A series of events, crises and slow gradual changes turned the parent/daughter relationship on its head; the gradual disappearance of the parents I knew; the end of a career and caring related health problems all took their toll. But as a carer you get through because you have to, it’s only when it’s over that you look round and see what the maelstrom has done to your life. I realised that I’d come out of the other end quite fearful that I too will get dementia and that the spectre of a tragic old age was robbing me of the life to come. I needed some re construction work to avoid living with an impending sense of doom.  Could I use Prof Joseph’s research to help me see the world differently now?

I drew a few lessons for me. I need to:

  • Face up to the possibilities that dementia and other older years ‘disasters’ might happen; plan and prepare as much as possible to minimise the impact on me and loved ones. Not push unwanted scary thoughts into the background.  I’ve started talking about it – a bit.
  • Find new and constructive ways of thinking about life with dementia. It’s so easy to focus on the losses dementia brings not on the reality of what life with dementia can be like. But there are increasing numbers of people living happy and fulfilled lives with dementia.  And whilst I have lost my ‘old Mum’, my current Mum is a delight to be with. My Dad had awful care, his journey with dementia was truly a nightmare. Life can be good with dementia – but the setting has to be right.
  • Express and recognise emotions , don’t try and ignore them.  When I was the main carer for Mum and Dad, I couldn’t face my feelings, they would have overwhelmed me, and indeed they did at times. But when Mum was in safely in the Abbey I had a deluge of emotional reactions built over the last decade. Everything caught up with me. I need to let the emotions through.

The more time I spend with Mum the more I value and appreciate the life and love we share. As we sit and sing together, laugh at one of her funny sayings or a childhood memory she shares with her sisters; as we hold each other’s hand and know we love each other; gradually dementia seems less scary, less of a disaster. Mum is not the person she was, but she is full of life and full of character;  she is happy, she has friends,  her life has meaning.  All because she is in a safe and caring environment where she is treated with respect and encouraged to get the most out of life.

Working to make the world a better place for people with dementia to live, focussing on what people can do all make a future diagnoses of dementia less of a disaster for all of us. No one would want to get dementia, but none of us knows what lies ahead. As we get older it gets harder to assume that we’re immune to the vagaries of the ageing process but there are ways of helping folk find meaning and even happiness after dementia. It takes time but I think it will be do able.

Take care



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