“I Have Dementia. I’m Still Me” : Further Training for the Henry Smith Project

Sinead Devine, Reading Rooms Officer for Older People, tell us about the latest dementia awareness training for Verbal’s Henry Smith funded project working in Care Homes in Derry/Londonderry and Omagh.

The Alzheimer’s Society cite that “70 per cent of people in care homes in the UK have dementia or severe memory problems”. At our support meetings for volunteers, dementia training was identified as one of the priorities to help volunteers to deliver Reading Rooms with more confidence. We approached Sarah Penney, a Research and Teaching Fellow working with the School of Nursing at Ulster University, to lead the training. Sarah has also managed a project to develop leadership and practice development in care homes in Northern Ireland. She notes that she feels “privileged to be working with My Home Life.”

Sarah also notes she is “enthusiastic about dementia care and supporting those with dementia to have a voice.” Sarah has been an invaluable advocate of the Reading Rooms, and feels it is a wonderful tool to enable those living with dementia to have a platform to have their voice heard and to tell their own story. She is also passionate about improving environments to become more dementia inclusive and accessible, launching her own small business creating dementia friendly signage. Sarah has supported us with the selection of care homes that are participating in our Henry Smith programme.

Sarah lead our training on 27th June, entitled I Have Dementia. I’m Still Me. It interestingly began with an exercise defining who we were as individuals, thus emphasising the importance of always seeing the individual in our Reading Room Sessions. Sarah outlined what dementia was and the different forms it takes, as well as causes and symptoms.

Dementia describes different brain disorders that trigger a loss of brain function. These conditions are all usually progressive and eventually severe. Alzheimer’s disease is the most common type of dementia, affecting 62 per cent of those diagnosed. Other types of dementia include vascular dementia affecting 17 per cent of those diagnosed, and mixed dementia affecting 10 per cent of those diagnosed. Symptoms of dementia include memory loss, confusion and problems with speech and understanding. Dementia is a terminal condition. There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051. (Source: Alzheimer’s Society)

Sarah then outlined how it affects the families of those living with dementia and the impact of this, both in terms of the emotive sense of loss of their loved one, and how the personhood of their loved one can be eroded. Personhood is “the standing or status bestowed on one human being, by others, in the connect of human relationships and social being” (Kitwood,1997). Many older people, on receiving diagnosis with dementia, find that other people view and interact with them differently. Often family dynamics change. Families and carers become more protective, advocating for the person affected, and this in turn impacts on their autonomy, resulting on the erosion of personal identity.

 

We use the Reading Rooms model to create a relationship centred approach that recognises the importance of maintaining personhood, relationships and connections to the community, despite problems associated with older age including dementia. Through communication, the Reading Rooms can support older people to retain their sense of personhood which helps sustain their relationships, allowing them to retain a stronger sense of well-being. Personhood is further eroded when older people are no longer given the opportunity to voice their thoughts and opinions. Reading Rooms also provides that opportunity to be heard and acknowledged.

One of the most valuable parts of the training looked at behaviours in terms of what to expect. Many artists would like to engage with people living with dementia but are afraid of upsetting them by saying or doing the wrong thing. The most important point is to remember that, as with anyone, all behaviour has an underlying meaning. Interpreting the person’s behaviour successfully involves putting ourselves in their shoes and asking what they might be trying to communicate. An example of this could be someone who is distressed. One of the physical causes of distress can be lacking stimulation such as conversation or meaningful activity. Being placed in care homes reduces the world for the resident and so conversations become more limited or even negative. Reading Rooms helps to provide opportunities to talk about a range of different subjects and experiences relating to the chosen story and poem. It also provides the chance for residents to tell their own story and for staff to get to know their residents better.

By the end of the session we agreed that in our approach to Reading Rooms we will aim to:

    • Adopt a calm approach and take time.
    • Use eye contact
    • SMILE
    • Use short sentences and simple language when asking questions
    • Give time for residents to think …. and to wait for a response with patience
    • Provide the person with clues through appropriate gesturing
    • Avoid asking questions that test memory too much
    • Try and see the feelings behind their words – The emotional response is the last thing to go
    • Always adopt Mike Nolan’s Six Senses Approach
    • And finally, always always put yourself in their shoes.

Already volunteers are reporting back their responses in how the training is aiding their delivery, how they have been able to better manage a range of behaviours, and how their empathy and understanding has increased due to the training. Thank you to Sarah for her wonderful insight and knowledge.

 

 

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