Taking Dementia out of the Closet: a World without Stigma
The video below portrays a woman named Barbara, who has a diagnosis of dementia. the film depicts her experience as she enters the Emergency Department of a large city hospital, an experience of lights, bells and monitors, interspersed by the shouts of – well-meaning – staff around her. [Why do some people think they must shout at people with dementia?]
I urge you to view Barbara’s Story – a video originally designed by St. Thomas’s and Guy’s Hospitals, London, and credited with the radical transformation of staff awareness in many UK hospitals in their work with people with dementia. The video will bring a tear to your eye and a smile to your face!
To play this poignant video, press the arrow on the screen. It is long, so give it time and be sure to have your speakers turned on.
https://youtu.be/DtA2sMAjU_Y
I was first drawn to Advocacy for Older People because it provided me with the opportunity to journey with and befriend older people at a time of profound change in their lives. From the time I was very young – pre-entry to convent life – I had a deep affection for older people with an equally deep desire to support them in any way I could. And now that I am old myself, it seems natural that the dreams of youth rest within the wisdom of the sage!!! And if in the meantime, I am privileged to hear of any concerns they may have, perhaps I could enable them to voice their concerns.
As I entered my last year in NUIG, the Leas Cross Report into the deaths of 105 elderly patients between 2002 and 2005 was published [2006]. The vulnerability, loneliness and isolation experienced by the older person – especially those without family – in residential care settings is, sadly and ironically, a fact of so-called developed societies today. The report galvanised me into training as an Advocate for Older People.
In the work of advocacy, I soon realized that, on average, a significant proportion of residents in nursing homes live with dementia. The work of advocacy on behalf of those living with dementia, therefore, is immense. It is estimated that, today, there are approximately 41,000 people with dementia in Ireland – a number expected to rise to between 141,000 and 147,000 by 2024 [HSE (Irish Health Board), 2015].
At a recent seminar in Trinity College, Dublin, a systematic review of the relevant literature showed that while public stigma associated with dementia is now low in the developed world, family stigma is high. This type of stigma includes family shame and guilt, often resulting in family caregivers concealing their difficulties from family members.
As a lover of – and one who always relies upon – the spoken word, I now accept that emotional memory can stay intact long after verbal/narrative memory has diminished. And here, there is one thing I am struck by over and over on my journey with the women and men who must navigate, alone, the unmapped territory of their daily lives and it is this: people want CARE. Where it comes from is secondary!
In our lives as Women of Mercy – what does “caring for one another holistically” have to say about our relationships with a sister who fears she is getting dementia? Or, in my connection with a sister who has mild onset dementia, perhaps I am, unconsciously, shying away from engaging with her because I tell myself, “it goes nowhere, anyway.” Is it because I find the attendant repetition too much? But how might she be feeling about the “memory” notes she repeatedly writes to herself every day? What is it like for her as she tries to cope with the fear deep inside, that something beyond her control may be happening to her?!
Perhaps, if I empathise a little more with Sister’s fear of what lies ahead, then together, she and I might be able to share things a little more? Maybe I will be able to help her see that, for her, the dread of losing her memory may be making the experience of the disease worse than it needs to be. Indeed, according to Professor Desmond O’Neill, “many with the condition will be affected in a relatively mild manner.” He goes on to say, “the good news is that the rate of dementia is dropping slowly, largely through better life-styles so the overall challenge, even in an ageing society, can be managed.” (Irish Times, Nov 3, ’13).
Stay blessed!
Meta Reid rsm
Western Province
