Carers’ Group: 9th September

Janet introduced the session as usual.

News

  • The Reflections Friendship Group has been assessed for the Dementia Inclusive Greenwich Award by the Dementia Action Coordinator for Greenwich and one of her assessors (who has dementia). The Commissioning Manager Older People for Greenwich also came along to see the assessment and discuss our work. We should receive feedback on the assessment soon. For more information on Dementia Friendly Greenwich, visit the Greenwich Community Directory here.
  • We were very pleased to announce the Reflections Reminiscence Project. The project will start in November/December, run monthly and will have a specific theme to each session. We will start with Christmas. Participation in the project is open to members of the Friendship Group, living in Greenwich, who would benefit from active participation. We aim to have a friendly, fun, atmosphere from the outset – we hope to have many of our current volunteers joining the project. The project follows-on from Peter’s 10 week “apprenticeship” with the Remembering Yesterday, Caring Today (RYCT) programme. More information on that here. We are very grateful to the Rotary Club of Greenwich for providing some funding to run the project. The Rotary Club magazine for August/September highlights the organisations interest in dementia see here.
  • Janet has discussed the Carers’ Group with the Commissioning Manager Older People for Greenwich, who will be promoting the group to Social Workers in the borough.

Group Discussion

One carer noted that her mother had become a lot less violent since her medication had been changed. This was good news, not least because it meant her carer might withdraw her resignation. The daughter also mentioned that the specialist was reviewing her mum’s diagnosis as they now thought she might have Dementia with Lewy Bodies (see here for more information on Lewy Bodies).

We then had a discussion on when it was appropriate to consider a move into a care home and the different types of services offered by homes. A summary of the differences may be found here. Age Uk has a guide on how to choose a care home and questions to ask when looking around (see here).

The group moved on to consider the pressures of caring for someone with dementia 24 hours a day and the benefits of joining activity groups and respite care. A member said her mum had used Volcare, and Miss Mardle and was about to try Oxleas Art Therapy.

We talked about the lengths carers sometimes need to go to ensure their loved-one eats and drinks, and how to react when they refuse to take anything. There were hard questions around an expectation that people should do everything to prolong life and about quality of life. The Social Care For Excellence site has information on eating well with dementia here.

Then we discussed issues around disinhibited actions in care homes and when it turns into a safeguarding issue. The Social Care For Excellence site has information on this and other challenges here.

Educational topic: Coping and Adjusting to Change

Life presents us with challenges/learning experiences. Some we may willingly embrace such as a new hobby, others we may not choose such as experiencing someone we care about living with dementia

Whatever the experience, recognising we do have a choice how to feel is empowering.

The brain is a huge computing machine capable of imagination and generating a wide range of emotions. These can be fleeting or they may stay longer. If you don’t like how you are feeling, consider that you can choose to change this. Something may upset you, this is natural as we are feeling beings. However we either choose to carry on feeling sad or we can review the situation, choose to let it pass and move on. Meditation shows that thoughts are transient constantly being replaced.

This is no different to supporting someone on their dementia journey. Perhaps the person with dementia (pwd) starts doing and saying things that you find upsetting. Your reaction to this can make a huge difference to you both.

  • Firstly recognising the pwd may be unable to moderate the way they are behaving, due to impaired logic, reasoning or disinhibition, can make a difference to how you respond. Also remember that you are not responsible for anyone else only yourself.
  • Ask your self how do I feel about this?
  • Is it something I really feel I should challenge?
  • If you do consider you should, maybe ask yourself why and is it really going to benefit either of you?
  • Look at your feelings? Does it help either of you if you feel angry or upset?

An example – perhaps the pwd is a disinhibited man and is kissing ladies hands and you feel embarassed about this. Consider why? Perhaps you are imaging they would be mortified if they knew what they were doing. The point is they are not the same person they were no more than we are. The experiences life brings changes us. Additionally if other people are understanding and accepting and no one else is upset, is it helpful to yourself to be upset on their behalf especially if the pwd is content?

  • Consider how you might look at things from a different perspective?
  • Maybe put yourself in the position of a friend being told about the experience. How might you help them? What other perspectives could you offer?

We have been talking about dementia but the technique of perspective can be used in any situation. Recognising in any situation you can choose an alternative is powerful. It may take time to change but you can if you wish to.

Some strategies :

  • Consider talking to someone you trust and value. This may bring another perspective.
  • If the issue is dementia related perhaps using the online forum Talking Point on the Alzheimer’s Societies website might provide examples of how others have coped in a similar situation.
  • Think about where else you might find an answer.

To end: meditation

As usual, once the group session had finished, people had the opportunity to take part in an optional 10 minute guided meditation. Everyone took part, and said how calming it was.

 

 

Information update

Understanding Dementia On-line Course

We have signed-up to do this course. you might be interested too. Understanding Dementia is a Massive Open Online Course (MOOC), offering university-quality education about the latest in dementia research and care. This free course provides an opportunity to engage with the perspectives of an international community, without requiring exams or assignments. Why not consider signing up for a MOOC profile and follow the prompts to enrol in the course – see here.

Friendship Group meeting on 24th July

  • Jamie, the quick-change singer, will be back with us following his very popular first appearance. Don’t miss it.
  • There will be Free Blood Pressure Checks (for those who want them). This service will be provided by Live Well Greenwich – more information on Live Well here.

Friendship Group meeting on 7th August

  • Tony, our much loved singer, will be back for another song and dance session.
  • The local Fire Brigade will be with us for a short presentation about fire safety – and they will stay for chats to small groups at the tables.

We are all precious – The GEMS®: Brain Change Model

Dementia care expert Teepa Snow suggests a fascinating model to explain the stages of dementia. Teepa’s GEMS™ revolves around remaining abilities rather than capacity losses.

Watch Teepa explain the GEMS™ model here.

 

Read her detailed explanation of each precious stone and their attributes here.

The GEMS™ model uses sapphires, diamonds, emeralds, amber, rubies, and pearls to help us better understand people with dementia, their behaviour and how we might choose to respond.

It is a hopeful and helpful perspective on the disease and those who live with it and it provides a framework in which we can support and encourage people with dementia to live enriching lives until the end.

The analogy of a pearl in an oyster shell to describe the last phase of life with dementia is especially beautiful and fitting. Teepee says “If what you think you see is an ugly shell, remember to look deeper: the most important thing is what’s inside.”

Thank you to Seeking the Good Life, a carer’s blog post we follow, from who we learnt about this inspirational model here.

The Flower of Emotional Needs

The Dementia Friends badge and logo is a forget me not. What is it’s significance?

 

Tom Kitwood (1937-1998) identified a number of fundamental psychological and social human needs. These human needs have to be met for us all, in order to maintain a good sense of well-being. He developed the idea of person-centred care.

Kitwood’s model, shows that when caring for, and supporting people with dementia, we must remember six psychological needs: love, comfort, identity, occupation, inclusion, and attachment.

Everyone has these needs and when we care for someone who is living with dementia, we need to ensure that we take the time to fulfill these needs and be very mindful of them.

Love

Everybody needs to be loved and to love someone; being loved and accepted is part of our need for survival, from when we are born. Love can range, from loving a person, an activity, a favourite meal/food, to loving God and feeling self-love.

Comfort

Feeling comfort is our need to be warm, dry and clean, having a full stomach and not feeling thirsty. Comfort also might mean to have quiet when we want or need it, to be free of pain, to have the freedom to move, and to have a sense of closeness, being able to bond with others.

Identity

We all have the need for personal identity; from the clothes we choose to wear, the food we prefer, and the way we like our hair. These are all identifying factors that help us and others identify with who we are.

Occupation

Most of us want to be occupied with something to feel like we have worth and purpose in life. From being involved in daily activities, to engaging in a planned activities programme it’s important that the person is able to occupy themselves with meaningful things.

Inclusion

Inclusion means that we want to be a part of something. If we feel left out then it makes us feel bad. People living with dementia may lose track of conversation easily, being mindful of their feelings of inclusion is important.

Attachment

Our connections in life are also crucial to our feelings of well being. Everyone wants to feel connected to something, or someone; often a combination of both. We also have a need to form wider attachments in our community, or in groups.

 

Thomas Kitwood, born in Lincolnshire was a pioneer in the field of dementia care. He completed an MSc in the Psychology and Sociology of Education at Bradford in 1974. Since then, he developed innovative research and training that was challenging the culture of care at the time. Kitwood wanted to understand, as much as possible, what care is like for the person with dementia. His major innovation to achieve this goal was Dementia Care Mapping, a method for observational evaluation of the quality of care that is provided in formal settings, such as care homes, or home care providers.

Kitwood founded the Bradford Dementia Group, University of Bradford, in 1992. He firmly believed that viewing people with dementia in purely medical terms, leads them to be seen as objects and as having no subjectivity or personhood. His specific ideas relating to person-centred care developed positive approaches to people with dementia which are discussed in his book Dementia Reconsidered: The Person Comes First

 

Article adapted from Tracy Steel 9/2/16 here