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News, information and discussion

Armchair travel experiences

We started with a brief presentation about the benefits of armchair travel – see the world (and beyond) without moving from your favourite chair.

Alzheimer’s Show at Olympia 7-8 June.

One of the group said she had been to this event in the past and found it useful, and was going again this year.

“The UK’s leading event for people living with Alzheimer’s, dementia or memory loss, The Alzheimer’s Show brings help and hope to families and carers and welcomes the public and professionals. The event is for anyone who is experiencing memory loss, has been diagnosed with Alzheimer’s or is living with dementia should come along to access a wealth of support and guidance on planning for their future. Families affected by Alzheimer’s, carers and professional support service providers should attend to find the latest advice, services and products to help those in their care.”

50% off Alzheimer’s show here (£10 reduced from £20 – there are concessions too).

Vision Call

A member had said her mother had used this totally free service, inclusive of glasses. She found them very understanding and helpful.

This organisation can provide sight tests in the comfort of your own home by their team of home visit optometrists, dispensing opticians and optical assistants.”We are dedicated to enabling and empowering individuals to see the world around them more clearly. Our patients are some of the most vulnerable people in our society, and our specialist holistic approach to eye care means that they can benefit from being more engaged with the world around them, feel less isolated and be safer within it.”

Glasses and dentures can be etched with a person’s name – which helps if they go missing in a care home – ask your provider for this service.

Dementia Carers Count

A member of the group attended one of their free courses in Birmingham and found it very useful. The group was made up of 15 carers – who were open and supportive. They had the chance to learn more about dementia and share their experience – as well as benefitting from a break from caring duties. Our group member says she now feels in control, more assertive and has got her energy back.

“Our core Dementia Carer Support Course has been developed for friends and family of people with dementia and aims to support a wide range of carers in different situations. This expert-led, 3 day residential course is run throughout the year and is designed with carers’ needs in mind. Carers attending this course will have an opportunity to gain a better understanding of their friend or family member, the type of dementia they have, and to explore different ways of responding to challenges. There will be time to think about your own well-being and you will be provided with a range of tools to enhance your resilience.

As a charity we do not make a profit. We are fortunate to have reserves from the sale of the assets of our previous charity (we used to own care homes) to invest in the development and start-up costs of our new services. It costs the charity £650 per carer to deliver the course, including food and accommodation. We do not want anyone to be excluded from our services so we are not charging a fee for our courses. Therefore, we invite course participants to donate to the charity on completion of the course, if they are able to. A donation of £5 pays for a coffee break for a carer, £15 pays for a carer’s lunch and £300 pays for an expert course facilitator for a day. All donations, big or small, make such a difference.”

The Chimp Paradox

The above book was mentioned on the course. The member attending the course found the book insightful and she has since bought a copy. Interestingly, Janet and I have recently discovered this book and been reading it.

“The Chimp Paradox is an incredibly powerful mind management model that can help you become a happy, confident, healthier and more successful person.” More on this next time – a very interesting read.

Respite Care

We revisited the benefits of care homes for short periods of respite. Some group members had been surprised that some care homes expect a minimum stay of two weeks. A break of this length can be difficult, especially for a carer who is trying respite for the first time – there are emotional hurdles to be negotiated.

Continuing care assessment for someone with dementia

Two members of the group had been successful in assessments. They found the process stressful, confusing and with many pitfalls, but worthwhile in the end. The link above gives the Alzheimer’s Society’s tips on how to approach an assessment.

 

And for those who wish to try something different

Mindfulness-Based Cognitive Therapy

I am on a training course at Lewisham Hospital for emotional resilience following cancer treatment – it is interesting and we could all do with some resilience!

 

 

 

 

 

 

 

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.