Monday, 28 September 2015

Reflections on Dementia and Missing

This September has been the forth global World Alzheimer’s Month. Research Manager Lucy Holmes shares some thoughts on dementia and missing.

Most people’s lives will have been touched by dementia at some point. I vividly remember the first time I encountered someone with dementia. I was about 5-years-old and living with my parents in a small house with a garden. One day, the woman who lived in the house backing on to ours tried to climb over the fence, dressed just in her nightie, calling out to us in panic. My parents explained to me and my little brother that we mustn't be alarmed; the lady was simply unwell, and didn't mean to frighten us.

Since then, until quite recently, I have had little contact with anyone with dementia. For the last few months, in partnership with the Centre for the Study of Missing Persons, University of Portsmouth, I have been working on a research project about people with dementia and missing. We have interviewed a number of people who care for a family member with dementia, and we are currently analysing and writing up our findings. I recently presented the early findings to the Alzheimer Europe conference, and you can download a copy of my presentation here.

Attending the conference and meeting all our research participants has taught me a massive amount. I’ve learned things that will affect not only my professional life and work, but also my personal relationships and beliefs. All of my preconceptions have been challenged, and I feel deeply motivated to share everything I’ve learned.

One of the most profound experiences for me has been meeting, speaking to and learning from many people living well with dementia. I’ve met some truly inspiring people who work tirelessly to improve people’s understanding of dementia, and to create dementia friendly communities.

I’ve also heard accounts of terrifically difficult experiences when someone with dementia has gone missing and their family face a stressful and anxious time while the search is on. Most people with dementia who go missing are found and return home, but a tragic few lose their lives while missing. The families left behind often feel guilt as well as distress. You can read Edwin’s story, of a man with dementia going missing and being found, here

The fear of missing incidents can make family life tough – some people I’ve spoken to told me they feel they must be constantly vigilant, which can be limiting and exhausting. For people living with dementia, their families’ fear of them going missing can mean they lose freedoms they have valued, and face a potentially depressing or unhealthy change in lifestyle.

People who care for someone with dementia may find themselves struggling to balance and manage the risks their relative faces. If you’re frightened that someone may go missing if they go out, it may be tempting to lock them indoors, but there are risks at home too – fire, gas, water, falling. And if people with dementia and their carers are too scared to go out, they will also miss out on fresh air, nature, exercise and socialising. We need to learn, understand and communicate how families can more easily keep everyone safe whilst also living happy and healthy lives.

There is much work still to be done to understand how and why people with dementia go missing, to improve the ways in which we search for them and keep them safe, and to make sure that after a missing incident they and their family have access to appropriate advice and support. In the coming months we will be publishing and sharing the findings of our research, and I hope that in future others will also join this important area of study.

At Missing People we will be here for those families around the clock. We will also help with publicity, something that can make a huge difference to a search for a vulnerable missing person with dementia.

If you want to know more about Missing People’s programme of research, you can learn more here

1 comment:

  1. Thanks for this blog Lucy, it really makes me realise yet again how complex the issue of dementia is and I have utmost respect for people who are in the caring role - so hard in every way.


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