A daughter’s experience; living with dementia

Written by Laura Hodgson

Laura Hodgson

Laura Hodgson

How can I describe who my mother is? To say succinctly who she is, who she was, who loves her, who she loves and what she values is a heart-wrenching exercise and feels strangely intrusive. My mother can no longer write nor can she easily articulate her thoughts and needs and certainly cannot share memories. I must do that for her. When my mother finally had to move out of the home she had shared with my father for over forty years into her new home, a residential care home for people with dementia, I tried to say who she was in preparation for her move. When the decision to move someone finally comes it is out of necessity and there is very little time to prepare.

My mum was moved five years after her diagnosis and after my dad had heroically looked after her with the support of carers, family and friends. Finally however her condition reached the stage where she needed professional nursing care. The Friday before she moved I wrote a simple profile of my mother. This was something which I instinctively felt I needed to do to make the transition easier. Without insight into who my mum is I worried that she would be a stranger in her new home. What does she like? Above all, chocolate, but also strong coffee, weaker tea with no sugar. Cats and small children. Wine with her meal. Who are her friends? There have been many over the years but Ros, Michelle, Al, John and David would all be visiting her. What does she enjoy? Gardening and cooking and being with her husband. What will annoy her? Intrusion, over-familiarity, aggression, a lack of respect for her personal space. What does she value? Intelligence, manners and humour. Did she have a sense of humour? Yes, and it is still there if you take the time to find it. All these things I tried to capture in her profile. Briefly and simply it gave an insight into a very fragile woman suffering with advanced dementia. Of course a profile cannot prevent her irritability or her completely uncharacteristic, but now frequent, temper tantrums born out of frustration with the hideous illness that she still tries to fight, but her profile does go some way to explain what might cheer her up, calm her down, engage her or relieve her distress.

A profile is not a panacea but it will provide the foundations for the new relationships which my mum will need with her carers for a more fulfilling future life. It will provide insight into who they are cleaning, feeding and talking to but most importantly it brings greater dignity to my mum and contributes towards a much more meaningful and dignified life where both these things are too often scarce.

You can learn how to create your own one-page profile and read more stories of people that have used them from birth to end of life at http://onepageprofiles.wordpress.com

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You know me so well!

A one-page profile re-blog by Dementia Consultant Victoria Metcalfe 

Victoria Matcalfe

Victoria Metcalfe

I recently had a birthday. It was one with a zero in it… I sat nervously in my living room all day, responding to birthday well-wishers by text and email, dreading the possibility that one of my nearest and dearest might have had the bright idea of throwing me a surprise party. I hate surprises. I love surprising other people – but I’m awful at being taken by surprise. Thankfully, this message must have trickled through somehow and it seems I needn’t have worried; my friends know me well!

Knowing someone well is the focus of a big piece of work I’m involved in at the moment. I’m a Dementia Consultant working for Anchor and we have been looking at how one-page profiles can be used to ensure that the people who live and work in a care home can really know and understand each other well. One-page profiles do much more than this of course. They help people with common interests and outlooks be matched together, they communicate important information for people who might not be able to communicate it themselves, they empower people to direct their own support and live the life they choose, but ‘knowing someone well’ really is at the heart of the concept.

Over 25 years ago I had a chance encounter with a young man who had Alzheimer’s . He changed my outlook on life. I can clearly remember to this day my first meeting with him and how distressed he seemed about being unable to communicate with the people around him.  I remember those same people equally as clearly and how little they were attempting to engage and understand him. They saw him as a bunch of symptoms not a person and it was incredibly sad to realise.  My overriding feeling about this was one of injustice and it is the injustice of people being marginalised or defined by their illness that still motivates me today to be person-centred in everything I do; to have empathy, compassion and most importantly of all, to care about knowing people well and basing support on this in-depth knowledge of them.

I’ve never had a planned career path – it just wasn’t something that I set out for myself. But I’ve been working with people with dementia for more than 25 years now, with social services, with the Alzheimer’s Society and for the last 13 years with Anchor. I knew when I joined Anchor that I agreed with and believed in their organisational values but it is the people I work with and their relationships with the people we support and their families that has made this job so worthwhile for me.

Anchor is the largest not-for profit provider of support and housing for people over the age of 55 in England but that’s not what makes us special. We are special because we believe in seeing and treating people as individuals. We provide person-centred care and moreover we want to improve on this further, embedding person-centred thinking deep into the culture of our organisation by making tools like one-page profiles commonplace for colleagues and customers.  We believe in doing with a person not doing for them. In supporting family and friends to adapt to a person’s changing abilities and always focusing on what they can do not what they can’t do. In a world that can see older adults as broken people, our celebration of people’s individual talents and gifts and determination to support them to live the life they choice is something I’m really proud to be a part of.

My own one-page profile describes what people like and admire about me, what is important to me and how best to support me. Needless to say I have included in it that I don’t like surprises – something which my friends might know about me but might be useful for a work colleague to know too. I’ve already changed my approach to team members after reading their profiles and understanding them better. It’s strange, you can work with someone for years and think you know them so well only to learn important information that you just hadn’t uncovered before – this is the power of the one-page profile; the succinct way it communicates the essential information to enable relationships, collaborative working and support.

Last month I attended the annual Dementia Congress. I’ve spoke most years but this time I went to soak up the information, to learn about the new and innovative ways people are transforming care for people with dementia, to meet colleagues and share best practice. I was shouting from the roof tops about one-page profiles and how this relatively untapped resource could revolutionise care for people with dementia. I believe that the one-page profiles that we are introducing in Anchor really will change people’s lives;  helping people with dementia live a life that makes sense to them in the way that they want and all based on a deep understanding of who someone is and what is important to them. Everyone should be able to say ‘you know me so well’ and soon they will!