As my mother’s dementia progressed after living in a care home fairly well for a few years, it was important that the care home were able to continue to communicate with her emotionally through Validation approaches and also to include her in decisions. This was the beginning of the journey of learning about Talking Mats ™ which was later developed to accompany a whole system of quality assessment of the care experience involving more people with dementia more meaningfully.
Hearing the voice of the person is a key driver for the quality improvement work for culture change. Involving people more meaningfully creates a more empathetic person centred and relationship, essential for relationship-centred care, focused on delivery of person centred outcomes. It gives tools to enable and equip staff to do a good job when given the time to deliver good dementia care, a key cause of attrition in care homes.
My mother Edith spent the last years of her life in residential care. She had a tragic childhood and hid much of this from us as children. Much of the pain was hidden so deeply that it was not revealed until her dementia had substantially progressed. By this time, she was in a care home. I knew that she had been locked away for a long time in coal shed but not that she spent time in a work house and felt abandoned as a victim of the first world war and an early death of her mother.
This experience had a great impact on her life. One of her greatest fears is being left/abandoned or being excluded from a conversation about things that mattered to her and a desire to please.
In the early stages of her dementia my mother showed signs of accusing, blaming and demonstrating the emotions arising from feeling marginalised. This resulted in her aggressive stance as she lacked trust in some of the people around her. She hung onto her sense of control and would shake her fist and wag her finger giving out threats such as the frequently heard exhortation with threats ‘ How dare you….. you have not heard the end of this…..’ .
After 2-3 years she gradually started to slip into the next stage of dementia, displaying time-confused characteristics.
It was clear that her UNFULFILLED NEEDS were:
· Safety and security (the need to be nurtured)
· To belong and to be loved and feel affection with others
· To gain appreciation and recognition
I started asking my mother what mattered to her and took myself on an extended course to learn validation methods to try to meet her emotional needs, with my friend and colleague Julia Pitkin. This is the passion behind the course we are delivering. iCarer Validation Course.
HER COPING MECHANISMS
Denial
Catastrophic reaction when she loses a sense control
Great problems admitting the type of establishment (residential home she was living in, regarding it as a hotel (when in mal-orientation). This might be due to her fear of the work house.
On this journey of learning my mother told me what mattered to her and I put it together as a poem.
Quality of Life
Someone who listens
Someone to talk with
Kindness and understanding
Someone to laugh with
‘Me’ to see ‘me’ a lot
I like to be liked
I like to please
I like to know what pleases you So that I can pass it on to someone else
Doing things, loving people
Letting them know you are thinking of them,
I like to see the light come into their face because I have said something that really makes them happy,
…….because I had so much unhappiness as a child
It is not so much about what people do but about relationship.
Person Centred Validation through our iCARER programme helps to respond to the emotions underlying ‘crucial moments’ with behaviour carers see as problematic as they don’t know how to prevent it or deal effectively with it when it happens. This requires a sense of vulnerability by putting ourselves into the shoes of the person and the emotions they are feeling. This needs to be taught and is essential to the quality of care provided in both care homes and care at home.