We started, as usual, with an information piece.
Deprivation of Liberty Safeguards (DoLS)
Regular readers of these updates will have seen our reference to DoLS at our last Carers’ Group meeting. This time we had a presentation by Tatiana. Safeguarding vulnerable people is a subject our group is very concerned about and there was a prolonged discussion on the detail. Our brief guide is here and is based on The Deprivation of Liberty Safeguards Code of Practice. A more detailed summary can be found here.
Group member then talked about issues that had been affecting them and shared information.
Useful information highlighted by one group member at the meeting:
- The Alzheimer’s Show at Olympia 7-9 June Other dementias are covered too! Our member went last year and found it very helpful. It is worth looking at the links on this site – for example: there are some interesting free digital downloads available by scrolling down to the bottom of their main page.
- Dementia Carers – a charity set up to support family carers. They provide free residential training courses for carers including free accommodation and meals. Travel costs need to be covered by the attendee. This member of the group will be attending one of their training courses soon in Birmingham and will give us feedback next month.
- My life films – “Celebrate the life of a person living with dementia by capturing their unique story in a film, produced just for you”.
- Unforgettable “Unforgettable offers the world’s best marketplace of products to help people affected by forgetfulness and dementia do the things we take for granted”. It is through them that she found out about Dementia Carers.
Group discussions
NHS ping-pong
We discussed the frustration and unhelpfulness of being ping-ponged between a GP and a Hospital.
One example was that a person was regularly fainting. He was taken to A&E, where they did some test and said he was fine, but that he should go to his GP. The fainting continues and the GP visited. The GP recommended he go to hospital, the hospital said the GP should take action. As a result the person with dementia is not helped, he has repeated unsettling visits to a variety of arms of the NHS, and the underlying problem is not found and he is still collapsing.
The second example was for a lady who had memory issues for around 10 years. For most of that time the doctors consulted concluded that she did not have dementia. 3 years ago the diagnosis changed and she was told she had early-onset dementia. Her husband, family and friends knew there was an issue, but the underlying problem was not found for a long time.
While we do hear many very positive stories about support for people with dementia from our group, I am reminded that many of the issues that affected my father when he had dementia 20 years ago are still issues today.
Urinary Tract Infections (UTI) diagnosis issues
People (particularly women) with dementia may appear to have rapidly deteriorated, this may be caused by a UTI. The symptoms of urinary tract infections may be mistaken for signs of dementia in someone who does not have dementia. A quick diagnosis and treatment will restore most people to their normal health. A group member pointed out there have been concerns raised about the inadequacies of the current testing regime. He mentioned a recent debate in the House of Commons – the discussion is interesting and you may see the transcript here.
Change
A carer described her feelings of guilt. Mornings and evening were the most depressing parts of the day. Her husband went into care three months ago. She realises she cannot cope with his needs now, but finds it hard to accept he is not at home. She takes him for days out and sometimes it is like the old times, visiting a son, going round the supermarket etc. She knows he is being looked after and she can spend whatever time she likes with him. She understands that life has changed, but she wanted the life that was. Group members could empathise, as some had loved ones in care. There are no simple answers.
Care providers
Finding appropriate, good quality care in your home is a regular discussion topic. We discussed providers who had been used by group members. Some people had managed to find just the right provision at the right time. However, the consistent experience was that appropriate help was hard to find, and when found often came with a waiting list. Research and early application for help works best – this needs an insight into the course of the loved one’s dementia, a clear head to understand what is needed, and time to plan it – conditions that are virtually impossible to achieve. Carers’ can only do their best and should be congratulated for their efforts – Janet concluded the meeting by thanking the carers for all the work they do to support their loved ones.
Reflections 