Twyford Dementia charity founder aims to change the 'culture of Dementia care'

Twyford Dementia charity founder aims to change the 'culture of Dementia care'

Changing the ‘culture of dementia care’ and ‘improving the experience of those being cared for’ is one of the many aims the founder of a Twyford-based dementia charity cited when discussing her long-term goals.

Shirley Pearce initially launched Understanding Dementia as a project under the umbrella of her family’s general purposes charity in 2017, and it soon became an independent charity in 2018.

The charity provides training for care workers, health care professionals and family carers in a bid to ‘change their outlook’ and ‘their understanding of dementia so that they are approaching it in a different way’.

Explaining its conception, Shirley who is also an occupational therapist specialising in Dementia, said: “The reason it started was that I was aware that there are these awareness campaigns and there’s also training for professionals which is very biomedical in content.

“When your trying to get somebody through a shower they don’t want to have what you need is not what their brain looks like in cross-section, what you need is the communication skills and that’s really what I focus on.”

Dementia is an ‘umbrella term’ which covers various different conditions ‘affecting different parts of the brain’ but ‘most of them’ share one commonality ‘which is the affect that it has on the storage capacity of the memory system’, Shirley explained.

She added that the ‘storage of new facts’ into the memory system ‘becomes increasingly patchy’ while memory still holds onto the feelings that accompanied ‘those missing facts’.

“That can be at best rather disconcerting, at worst it can be rather frightening.”

Prior to the coronavirus outbreak, Shirley would travel to care provider’s premises to provide training courses, covering a range of topics, including, as stated in her training leaflet, ‘the importance of well-being', 'how memory normally works', 'how dementia can affect memory'.

Highlighting the term ‘well-being’ the Twyford resident added that there are four basic feelings needed for an individual for ‘feel ok’. These include self-esteem, a ‘sense of autonomy to feel in control, social confidence and a ‘sense of hope’ – all of which are threatened in dementia.

Explaining her training approach Shirley said she teaches a ‘simple ABC’ – A encourages carers to ‘avoid asking questions’, B asks carers to ‘be a buddy’ and ‘build a bond’ and C calls to ‘cut out the contradiction’.

Discussing A, Shirley said: “Their memory system hasn’t even thought of the question that is being asked so they can have the sense that somebody is standing there and waiting for an answer and they are really not sure what the question was.”

Explaining B she added: “Build a bond with the person so you’re not standing over them as the expert in everything you’re alongside.”

Highlighting the scenario of a party to describe C, she said: “If somebody was horrible to you then you will have a negative feeling but you will know why it is you’ll know what it refers to and so you can rationalise it and you can put it all away but if your memory isn’t working like that then you can’t do that all the time.”

She added: “So we can’t tell which individual memory the person’s using to make sense of the way they feel right now but we can be sure that it came from their own memory system because they can’t use ours.”

She added that if people could ‘accept this without arguing’, damage to their well-being could be avoided.

The charity which also organises fundraising events, hosted its first Quiz Night last November, raising £1,120 and was set to hold its annual Barn Dance in May, which has now been postponed due to the coronavirus.

“My dream is to change the culture of dementia care really and improve the experience of those being cared for and I really want to make well-being in terms of self-esteem, autonomy, social confidence and hope really the number one priority in dementia care.”

Shirley is currently finding alternative ways of providing training during the coronavirus outbreak.

For more information visit: call Shirley on 07753501149

Charity aims 

Shirley added that she has four aims for the charity. These include:

  • “To change the culture of dementia care and improve the experience of those being cared for.
  • To educate people about the real impact of dementia on the person as opposed to just its effects on their brain, their body and their behaviour.
  • To demonstrate the effectiveness of Understanding Dementia’s approach and that is going to entail some evaluation or research.
  • To build Understanding Dementia into a lasting and financially independent organisation so that this can continue.”

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