I'm not sure why big conferences are quite so addictive nor quite so tiring. I suppose that having to perform doesn't help - all that need for approval by peers, all the fear of failure, of rejection or of both - must be the principle cause of the stress. That, and watching and listening to others, seemingly so smooth and polished in their content and delivery.
We did good, as the Americans might say, and our average-size audience appeared to be awake throughout our gallop through a valuable and unusual project with care workers developing autobiographical picture albums with residents and their families, that came about as a way of 'proving' the carers' levels of learning from Many Happy Returns REAL Communication workshops.
Margaret T is for me the star of the video we made about the project. A woman whose dementia presented as generally hostile and aggressive (she packed a hefty punch for someone who was so apparently slight - as the small of my back discovered one afternoon while I stood innocently talking with a care worker in the corridor).
Her dementia was very advanced and after the album was completed, she didn't live for very much longer, which is a shame as she really came to life when speaking about her mother parking the car in the garage and other such memories and could have gained considerably more pleasure from her life story album subsequently.
There was much else to discover and learn in the endless parallel sessions of the day, so it was quite a brain stretch in that respect too.
The session I was probably most intrigued by was the final one titled by two very pertinent and challenging questions, "Are grief and pain inevitable in the dementia journey?" and "How can services truly help and support people with dementia and carers?". Slightly opposing views were presented by experts and specialists Graham Stokes and John Killick, with Anne Marshall in the Chair. The audience shared some vibrant, personal, touching and sad experiences. Many people who work in this sector have had personal experience of dementia through close connection with someone with it.
All through the Congress, dementia was discussed in terms of our perception of how it affects others; how it affects carers, families and loved ones in a mostly terrible way. Its stigmatic effect was likened to public perception of cancer some years ago. Charmingly, one presenter living with dementia described it as an unvited guest named 'Alice', who had come to stay indefinitely.
But perhaps dementia is actually OUR problem, not that of the person who is living with it. It is we who say sadly how it has changed the other person, how they have become unrecognisable, or how we are losing or have 'lost' them, that they (and we) have become strangers, moving ever further away from one another. Those outlooks have much understandable pain and grief attached.
But life changes all the time anyway, doesn't it? For example, as people age, their hair goes grey or falls out, their looks and their outlooks change, their physical health and robustness may decline, they may become right-wing or grumpy or both, or more determinedly rebellious, in a 'purple hat'-wearing way. Occasionally I have met people from my past - say from 30 years ago - and I can honestly say that I hardly recognise them – or their personalities.
Of course dementia is a truly insidious and vile condition for anyone to have. It is as though the person's brain has been taken hostage and they are trapped inside just as we are shut out. It is terrible to witness at close quarters, particularly for people caring for another who has it at home. I fear the disease myself, with my mother having had it for ten years and a family to some extent riven by it. But spending as much time with her as I did, it was also on some levels, a gift and a privilege.
I decided early on in her dementia journey to try to see her as a new person rather than someone familiar whose brain wasn't working properly anymore. It definitely helped.
Despite us never having been close before the strokes that kickstarted her dementia, and despite her being unable to speak for the last months of her life, we became increasingly close and I frequently spent time with her, just doing, - well, what did we do..
In her last year my frequent visits to the care home consisted of us pretty much just 'being' with one another in a mindful, meditative sort of way. Early on I had made her a life story album and we regularly spent time looking at it together.
"I love this book" she would say while she was still able to. But we also communicated by means other than words and despite our apparent inactivity, time often seemed to flash by when we were together.
Re-mapping our understanding of ourselves in relation to those with dementia is certainly going to take some time. Meanwhile, I do hope there will be lots more sessions like that one at the Dementia Congress.
I'm not sure why big conferences are quite so addictive nor quite so tiring. I suppose that having to perform doesn't help - all that need for approval by peers, all the fear of failure, of rejection or of both - must be the principle cause of the stress. That, and watching and listening to others, seemingly so smooth and polished in their content and delivery.
We did good, as the Americans might say, and our average-size audience appeared to be awake throughout our gallop through a valuable and unusual project with care workers developing autobiographical picture albums with residents and their families, that came about as a way of 'proving' the carers' levels of learning from Many Happy Returns REAL Communication workshops.
Margaret T is for me the star of the video we made about the project. A woman whose dementia presented as generally hostile and aggressive (she packed a hefty punch for someone who was so apparently slight - as the small of my back discovered one afternoon while I stood innocently talking with a care worker in the corridor).
Her dementia was very advanced and after the album was completed, she didn't live for very much longer, which is a shame as she really came to life when speaking about her mother parking the car in the garage and other such memories and could have gained considerably more pleasure from her life story album subsequently.
There was much else to discover and learn in the endless parallel sessions of the day, so it was quite a brain stretch in that respect too.
The session I was probably most intrigued by was the final one titled by two very pertinent and challenging questions, "Are grief and pain inevitable in the dementia journey?" and "How can services truly help and support people with dementia and carers?". Slightly opposing views were presented by experts and specialists Graham Stokes and John Killick, with Anne Marshall in the Chair. The audience shared some vibrant, personal, touching and sad experiences. Many people who work in this sector have had personal experience of dementia through close connection with someone with it.
All through the Congress, dementia was discussed in terms of our perception of how it affects others; how it affects carers, families and loved ones in a mostly terrible way. Its stigmatic effect was likened to public perception of cancer some years ago. Charmingly, one presenter living with dementia described it as an unvited guest named 'Alice', who had come to stay indefinitely.
But perhaps dementia is actually OUR problem, not that of the person who is living with it. It is we who say sadly how it has changed the other person, how they have become unrecognisable, or how we are losing or have 'lost' them, that they (and we) have become strangers, moving ever further away from one another. Those outlooks have much understandable pain and grief attached.
But life changes all the time anyway, doesn't it? For example, as people age, their hair goes grey or falls out, their looks and their outlooks change, their physical health and robustness may decline, they may become right-wing or grumpy or both, or more determinedly rebellious, in a 'purple hat'-wearing way. Occasionally I have met people from my past - say from 30 years ago - and I can honestly say that I hardly recognise them – or their personalities.
Of course dementia is a truly insidious and vile condition for anyone to have. It is as though the person's brain has been taken hostage and they are trapped inside just as we are shut out. It is terrible to witness at close quarters, particularly for people caring for another who has it at home. I fear the disease myself, with my mother having had it for ten years and a family to some extent riven by it. But spending as much time with her as I did, it was also on some levels, a gift and a privilege.
I decided early on in her dementia journey to try to see her as a new person rather than someone familiar whose brain wasn't working properly anymore. It definitely helped.
Despite us never having been close before the strokes that kickstarted her dementia, and despite her being unable to speak for the last months of her life, we became increasingly close and I frequently spent time with her, just doing, - well, what did we do..
In her last year my frequent visits to the care home consisted of us pretty much just 'being' with one another in a mindful, meditative sort of way. Early on I had made her a life story album and we regularly spent time looking at it together.
"I love this book" she would say while she was still able to. But we also communicated by means other than words and despite our apparent inactivity, time often seemed to flash by when we were together.
Re-mapping our understanding of ourselves in relation to those with dementia is certainly going to take some time. Meanwhile, I do hope there will be lots more sessions like that one at the Dementia Congress.