CSAN Blog

See me rather than my dementia

  

Ben Bano is Director of a Community Interest Company – ‘Welcome Me as I Am’ – which is a member agency of CSAN and provides training and support for staff and volunteers in person centred approaches to dementia care 

CSAN’s campaign in Dementia Awareness week is right to focus on the importance of working conditions and training for those working with people whose lives are touched by dementia. It’s only through providing the best possible care and support that we can focus on two of the most important aspects to caring for the ‘whole person’ – promoting personhood and dignity.

The term ‘personhood’ has been developed to counter the stereotype of the person with dementia gradually losing their physical and mental functioning and their personality as dementia advances. The concept of personhood reinforces the image of the person with dementia as someone who is able to experience emotions, both positive and negative, as well as the ability to share these emotions to those who are able and willing to be present in what might be a bewildering and confusing situation. It is at the root of all the work with people whose lives are touched by dementia and is a core value for my own organisation – ‘Welcome Me as I Am’ – as well as for CSAN’s member agencies working in the field of dementia care.

The promotion of dignity and empowerment has a natural place in dementia care as well as a special place for CSAN’s member agencies whose work is underpinned by Catholic Social Teaching. This is because dignity and empowerment are linked inextricably linked with our view of a person with dementia as a person who can and should lead a full life in spite of their diminishments.

 The well known author and columnist Daniel O’Leary speaks movingly of the ‘power of presence’ in promoting dignity as dementia advances:

“The role of your body in revealing presence is central; the graciousness of your eyes – windows out and windows in; the touch of your hands – extensions of your heart; your body – the dignity of composure; your body betrays the inner state of your soul; the dignity of your voice, a radiance from your physical presence, a reverence for the Presence of the other.  Then you release a healing Presence in the other.”

For those close to a person in the advancing stages of dementia, diminishments need to be put in the context of a person whose life story needs to be seen in the context of lifetime of achievement and fulfilment. As a person with dementia loses their sense of reality, visual and other memories are needed to remind them – and even more importantly, their loved ones, of the person that they have been and will continue to be. The promotion of spiritual needs, which is a focus for the CSAN member agencies working with dementia, becomes particularly important.

This is the challenge before us and it is why we need to support, train and nurture those involved in providing care and support in person centred care.  This work is an act of compassion, sensitivity and humanity.

 

The views expressed in this blog are not CSAN policy.

Support and care in Leeds

  

By Sharon Forbes, Service Manager for Adults with a Learning Disability & Older People at Catholic Care (Diocese of Leeds)

All the groups and activities we run at Catholic Care Leeds are inclusive of all denominations and welcome people who live with dementia. People whose lives are touched by dementia attend the Harrogate luncheon club (with support from a family member and carer), two ladies attend the exercise class in Normanton with their husbands who then leave to do other things – one gentleman said he goes home to catch up on the housework and in his words,  “enjoy a cup of coffee on my own”. This respite time for carers is incredibly important.

We are aware that people with dementia can have difficulty with: remembering what they are doing, finding the right word for something, recollecting names and faces, understanding instructions, getting around in new and confusing environments.

With these things in mind, we welcome people when they arrive and wear badges that remind people who we are and will make it easy for people to know who can help them. Everyone is greeted warmly and with a smile, ensuring we make eye contact; we use a friendly tone of voice, speaking clearly and slowly so allowing people time to understand what is being said. We listen carefully to what people say and give plenty of encouragement, we have the room set out in a welcoming way, make it easy to get around and where possible we try to keep things the same because we are aware that change can be confusing. We also have somewhere people can sit that is quieter if they need a break, we support people in a non intrusive way, encouraging ability whilst it is still present, but ensuring that any support given is not overtly obvious.

We have experienced great acceptance from other groups members who have become, for want of a better word, quite ‘protective’ of the person.

All our activities are supported by the Domiciliary Care Team who are on hand to support either the person living with dementia or their carers. We also work closely with professional agencies who can offer additional advise and support where necessary.

 

The views expressed in this blog are not CSAN policy.