Understanding dementia, and focussing on care and research, are key issues for today’s society, where there are over 820,000 people living with dementia in the UK (1), and a new case is diagnosed every three minutes (2).
By 2020, it is estimated that 40,000 veterans requiring nursing care will be affected by dementia. The Royal Star & Garter Homes is a charity which offers specialist nursing and therapeutic care to ex-Service people, including those living with dementia. The Charity’s standard of dementia care is exceptional. Its mission is to support residents and raise awareness in many different ways, from training all care staff in ‘Being a Star’, our Dementia Care course, to providing reminiscence equipment to support all residents in remembering and communicating.
The Alzheimer’s Society is running Dementia Awareness Week from 18-24 May. To support this, and to showcase the Charity’s exceptional dementia care, the Director of Care & Service Development, Pauline Shaw, recalls her experiences of dementia care through her career:
Dementia Care Past & Present
There are journeys we make in life which have a profound impact, and this is a sample of an important journey for me.
I sometimes think back through my career in health care and reflect upon different times, working with a variety of people and in a range of care settings. Right at the very beginning I remember working as a health care assistant in what was known as a Geriatric Hospital in a former workhouse in Suffolk. It conjures up a mental image of an imposing and unforgiving brick building with rows of small, unhappy windows where former inmates would have once stood and gazed outside. It was indeed a massive brick building, with long, almost endless, dull corridors which opened up into wards where rows of beds stood in regimental lines.
I remember the soulless feeling of the place and the stigma attached to being a patient in a former workhouse. I recall some of the patients telling me that admission to such a place meant an unhappy existence and there was only ‘one way out’. I remember feeling quite scared, that I had entered some kind of Dickensian world where nothing was quite as it seemed. There was a definite feeling that the uncomfortable truths about the past lived on in the lives of the older people now housed there who, it appeared, had nowhere else to go.
I was young and it was my first experience of care.
I remember my first day on duty, in my starchy uniform and white cap and a blue woollen cape with red lining. It felt rather special to wear such a uniform in such a grim, grey environment. The patients I would be working with had dementia. I didn’t know that then. I was told they were ‘senile’. I didn’t know what that meant either.
I felt sorry for the patients, the long, boring days spent in a ‘day room’, watching the television interspersed by meals, ‘toileting’, baths and ‘back rounds’. I actually have no recollection of their lives being filled by anything more than the basic essentials. Having said that, I do not recall witnessing any poor care, there was care and compassion but it was wrapped up in a neutral and totally task-focussed approach. In fact, the care was not about the people, it was about completing tasks.
Now, I want to fast-forward through three decades to the present day. It is a much happier, more person-centred place to be!
I walk into the hallway of our specialist dementia care family environment and I can see, and, importantly, I can ‘feel’ a place infused with laughter, warmth and love. The physical care needs of residents are met discreetly and with their active participation and involvement. The environment is colourful, engaging and full of interesting things to talk about, to look at and to hold and explore. The staff are not working to a set of tasks and deadlines. Instead, they are working alongside people, at ‘their pace’, in ‘their place’.
Staff wear their own clothes, uniforms have been discarded in favour of colourful and comfortable clothing. A variety of costumes are also available for staff and residents to wear, promoting fun and role-play. There is no shortage of staff (who clearly have yearnings for the stage) eager to get into role as Superman or a bride on her wedding day. It is part of what they do, to create moments, fun, distraction and something very special.
Night staff have long been wearing pyjamas and dressing gowns. It makes so much more sense than wearing day clothes or a uniform when you are reminding someone that it is dark outside, or late, or that they are tired. Staff also wear decorative aprons which contain small props to act as conversational prompts. This is a useful technique to support communication with residents. The environment is also full of props – what we call ‘stuff’. The stuff is deliberate and is intended to be used, not just looked at. It includes items used by people in their past, which residents find reassuring. The items prompt reminiscences about residents’ own experiences and recollections over long-submerged memories. The stuff is selected to be meaningful to the people who live there: items may be connected to a person’s previous occupation, particular interests and hobbies or, more generally, themes which many can relate to. It helps people to find their way around, and to make sense of a world which is becoming increasingly confusing and disconnected to their reality and experiences.
Many of the people who live with dementia find comfort from dolls and soft toys. I often see a resident holding a soft toy or doll with great tenderness and care. The feelings of nurturing and being nurtured remain so crucial to us all, no matter what our reality.
The environment is colourful, dynamic and interesting. Every time I enter these spaces it looks and feels somehow different. A picture has been decorated, new items have appeared in the hallway and music is playing. I might catch the delicious waft of cakes baking or find myself involved in a dance or game.
The way we approach care for people living with a dementia involves real engagement with feelings. It means that we must feel connected and grounded with ourselves, our own values and beliefs. This in turn means that we work as a close, coherent team which is feelings-based and emotional. Without this connection with what really matters, how can authentic, meaningful and individualised care be provided to the people living with us? The majority of what we do is based ‘simply’ on common sense, on being treated as we would wish to be and with care, compassion and love. I see examples of this everyday – special moments – sometimes fleeting, always priceless.
1 Source: ‘Dementia 2010’ Alzheimer’s Research Trust
2 Source: Matthews F et al. (2005) The Incidence of Dementia in England and Wales: Findings from the Five Identical Sites of the MRC CFA Study. PLoS Medicine, Vol 2, Issue 8, e193, 1-11