A lovely afternoon with 22 “friends”. A chance to play dominoes, join-in quizzes and reminisce about conkers and marvel at their beauty.
Author: Peter
Chair of trustees Reflections
Carers’ Group: 11th September
We were pleased to welcome 4 new members and 1 returning member. All the usual regulars sent their apologies and said they would be back next time.
As we had so many new people we recapped some of the items we had discussed before.
We discussed:
- Feelings of isolation.
- Dealing with differences of opinion: who’s reality is “real”, is the “truth” worth an argument?
- The impact of a loved one going into care.
- The black spot analogy – a disease is only one part of a person’s story.
- The bookcase analogy – the effect of dementia on memory.
- The need for carers to look after themselves as their first priority.
- Good reads: info here
- Carers Toolkit : Understanding the different types of memory, how they are used all the time seamlessly and the impact of breaks in the chains.
After the meeting there was some discussion about:
- The benefits and downsides to moving home after a diagnosis and the Alzheimer’s Society’s discussion forum “Talking Point”: info here
- How people with dementia may be affected by noise: info here
- The possible link between pollution and dementia: info here
- The Alzheimer’s Society’s information hub: info here
Janet also suggested members consider joining a Mooc / Coursera course. These sites have many types of free courses including one about dementia. *: info here.
As a new feature, where carers are supporting someone remotely and not able to attend our Friendship Group, we are providing copies of our puzzles and quizzes from the previous Friendship Group session so they can do them together.
* We have not yet taken the course on dementia so are unable to provide any comment about it. However it looks interesting.
The next Carers’ Group is on Monday 9th October.
We look forward to seeing you next time.
September 5th: Tony’s tunes
We were pleased to welcome back Tony, who is always popular.
He had an audience of 32 friends, who joined in with singing and dancing.
The quizzes are proving a big hit, encouraging table discussion, so we plan to include a few of these each time.
August 22nd: Knitting & Archery
Another lovely afternoon with 28 friends coming along.
Thank you to Angelika, of Dementia Dialogue, who kindly came along to host a knitting session and provided the needles and wool. People had the opportunity to knit a memory purse, to contain a strip of paper with their happy memory written on it. Some lovely purses were made.
Thanks again to Marc (nice shirt!) for once again providing a great archery session, perhaps for the last time, as he hopes to take up a full-time job soon. You’re welcome back anytime, if you have a spare afternoon.
We also had time for a sing-song and some quizzes.
See you next time,
Carers’ Group: 14 August
We welcomed 3 new people to the group all supporting their Mum’s following a recent diagnosis, with a total of 6 people attending. Julie and Marie supported 1 person while their carer attended the group session. They had a good time doing archery.
The issues discussed by the group were:
- The book case analogy
- Not focusing on the black dot of dementia
- Emotions and feelings following diagnosis
- The need for health professionals to recognise and respect that some people with dementia do not like hearing the word dementia and are happier hearing memory problems.
- Feeling guilty and isolated
- Where to find help and other groups suitable to take people with dementia – The group were aware of the services of the Alzheimer’s Society but wanted to know what else was on offer. The group suggested The Stables and Age Exchange the latter whom run an event on a Sunday.
- Persevering to get help and knowing the right people to ask – sometimes initially help may not be offered but by persevering and going back it is possible to get help and support.
- Carer’s Toolkit – We discussed the benefits and uses of oral history work. It can be a great way for carers to connect with the people they are supporting and enables people with dementia to tell their story in their own words. The oral history can be played back later as a reminder to the person with dementia and for others as a way to get to know more about them.
- We also talked about the benefits of a rummage box for people with advancing dementia and the sorts of things they might contain.
Information on local services
Age Exchange Blackheath offer a broad programme of training and support services for people and their carers living with dementia together with regular training and support for Reminiscence Arts Practitioners and community workers.
Age Exchange, Number 11, Blackheath Village, London SE3 9LA
Email: hello@age-exchange.org.uk for all general inquiries
Telephone: 020 8318 9105
Web site: http://www.age-exchange.org.uk
The Stables SE7 is a facility set up and managed by The Greenwich Carers Centre. The Centre has been operating for 25 years and during that time has supported over 13,000 Adult Carers and more than 400 Young Carers (those aged 8-17 years). Across those 25 years of operation the agency have listened to carers and have created a facility and service that truly represents superior support and value for money.
The Greenwich Carers Centre, The Stables, 76 Hornfair Road, Charlton SE7 7BD
Email: info@greenwichcarerscentre.org
Tel: 0300 300 2233
Web site: https://www.thestablesse7.com/index.php
The Greenwich Community Directory is an online resource offering local residents access to information on social care, health, wellbeing and advice services in the Royal Borough of Greenwich. The integrated directory serves as a single point of information and advice on services to help people to live well in Greenwich.
You may find out about dementia services in Greenwich here
Oral Histories
We all have stories to tell, stories we have lived from the inside out. We give our experiences an order. We organize the memories of our lives into stories.
Oral history listens to these stories and is the collection of living people’s testimony about their own experiences. If we do not collect and preserve those memories, those stories, then one day they will disappear forever. Your stories and the stories of the people around you are unique, valuable treasures for you, your family and your community.
You may find someone is reluctant to start talking initially, but once they get going you may be surprised by what you learn. It’s a great way to spend time and connect with someone.
Introduction to recording an oral history here
Sample questions here
August 8th: archery and quizzes
Another busy group today and we were very pleased to welcome three new people.
25 Friends came along for some archery, quizzes and a chat.
We are very grateful to Marc for managing to squeeze in another visit in his busy schedule. His archery sessions always prove popular, with new customers and veteran archers.
Janet has found a source of excellent quizzes. These proved popular, so we will be doing more of them in future. And we’ll make sure we give out the answers before everyone goes home – it’s clear that people are keen to know what their score was – and what were the answers they didn’t know: like the name of the first Russian dog in space.
Thank you to Sarah, Marc’s wife, for donating the skittles. The biscuit stock was also replenished with some welcome nibbles, thank you.
Angelika Welzel-Connolly, Dementia Action Co-ordinator for the Royal Borough of Greenwich, briefly introduced the Dementia Reference Group and gave out some information about the group (see here). Next time Angelika will return to answer any questions about the Reference Group and invite people to join.
As part of Dementia Dialogue Angelika will also run a knitting session that is guaranteed to produce wonderful results by 3pm!
For more information about Angelika and Dementia Dialogue see here.
Making Royal Greenwich a dementia-friendly Borough
You might be interested in Greenwich Council’s (slightly dated) guidance. You can find information on their web site here or read their pdf “A toolkit for business” here.
See you all next time,
July 25th: Tony sings for us
A total of 26 friends, including two new people, came along and enjoyed Tony’s sing-a-long session.
There was plenty of singing and dancing
The dancers were full of energy and the singers in good voice. Tony needed a few slow songs to recover!
Happy 1st Birthday Friendship Group: 11 July 2017
On the 11th July we celebrated the 1st birthday of the Friendship Group.
It was a lovely afternoon with 28 friends joining in the celebrations.
We had strawberries and fizz and Marc the archery coach came along again. Thank you to Bronwyn and Rob for supplying the strawberries, cream and bowls – Gloria and Martin for the cake – and Shrewsbury House for some fizz.
Some wonderful bunting was made by the group. It is too nice to display just once, so it will be displayed over the next few sessions.
Tina suggested the group could make some bunting for me. It was so thoughtful and I have displayed it at home.
As well as celebrating, it was also a time to remember and toast absent friends – those who can no longer attend for various reasons.
It was definitely an afternoon to lift the spirits. Thank you to everyone who has visited our group and especially to Deb, Tony and Thorntree School without whose donations we would not have been able to develop the group
Here’s to our next year!
Dementia Awareness Week – Hospital Admissions and John’s Campaign
15th to 21st May 2017 is Dementia Awareness week.
The Royal Borough of Greenwich are holding a Dementia Awareness Event tomorrow Wednesday 17th May between 1.30pm and 5pm at:
The Stables, 76 Hornfair Road, Charlton, SE7 7BD.
Come along where you can find out about local dementia services and perhaps take part in the interactive sessions being provided. We are pleased to say we are taking part in this community event.
As well as talking to people about our groups we want to take the opportunity to talk about Hospital Admissions and John’s Campaign. All the NHS Trusts running local hospitals have signed up to be part of it.
So what is John’s campaign? John’s Campaign is :
“for the right of people with dementia to be supported by their family carers”
John’s Campaign was founded in November 2014 by Nicci Gerrard and Julia Jones. The Campaign is named after Dr John Gerrard, who died in November 2014 after a catastrophic stay in hospital.
Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being. John’s Campaign applies to all hospital settings: acute, community, mental health and its principles could extend to all other caring institutions where people are living away from those closest to them.
In the time since the campaign was founded, over 1000 institutions have pledged support and a lot of progress has been made – but there is a lot yet to be done.
For their advice for carers see here. For more information about John’s Campaign see here
Hospital Statistics
The Alzheimer’s Society produced statistics in their 2009 report “Counting the Cost: caring for people with dementia on hospital wards:
- Over a quarter of hospital beds in the UK are currently occupied by people with dementia
- The average stay of a person with dementia is three weeks but it can be much longer if rehabilitation is a problem or there is no where suitable to go.
- One third of people with dementia who go into hospital for an unrelated condition NEVER return to their own homes.
- 47% of people with dementia who go into hospital are physically less well when they leave than when they went in.
- 54% of people with dementia who go into hospital are mentally less well when they leave.
Tips to manage the patient experience
- As per John’s Campaign, speak to the nurse in charge to let them know you are the main carer and to arrange open visiting. This means you will be able to visit outside of normal visiting hours if you want to.
- Speak to the doctor in charge of the patient’s care. This can be requested via the nurse in charge. This is essential as the doctor will have the overall say as to what is going to happen. Doctors have a busy schedule but on request they will meet with you or give you a phone call. You can find out about the patient’s treatment plan and can then make it clear if you want to be involved in decisions around the patient’s care, and accompany them should they need to leave the hospital to go on any appointments or be transferred. You can also let them know about any concerns you may have about supporting the patient on their return home.
- Before the patient returns home, a discharge meeting will take place. If you want to be included in this process, let the doctor know. This is the opportunity to make sure you have the right support to continue to care for the patient taking into account the recent changes. If you are not happy about something let them know. Your opinion is important and you do have a say.
- A hospital social worker will usually be involved if a patient needs a care package to return home or special equipment. Again you can ask to meet with them.
- You know the patient best. Be polite but assertive when speaking on behalf of the patient.
- PALS – The Patient Advisory Liaison Service, is there to help. They can be found in every hospital. In the Queen Elizabeth hospital (QEH) they have their office at the back of the foyer. Tel: 020 8836 4592. Do speak to them if you have any concerns that you feel are not being dealt with e.g. on the ward as they can liaise on your behalf. Do not be afraid to contact them as they are there to help.
- The QEH, has an Elderly Care Pathway Matron. She is another person you can ask to see to share your concerns. Tel: 020 836 5299.
Important – Do not rely on the ward nurses to pass on any messages. They are extremely busy and they may accidentally forget to pass on your message. Following the tips above may help prevent you from becoming stressed and feeling you are not being heard.
Also – If you are the main carer, have you given any thought as to what will happen if you become ill or need to go into hospital? Giving some thought to this now may help to give you peace of mind should this happen.
Carers’ Group – 8th May
6 Carers attended the group with the other 2 regular carers providing notice they would be unable to attend this time.
The group started by briefly talking about Teepa Snow’s Gems model and how it can be helpful in recognising where someone is on their dementia journey. See here to read more about this and see Teepa’s video where she explains the Gems.
We talked about the power of music to make a connection with someone and as singing comes from a different bit of the brain to speech, people who struggle with conversation can usually sing well known songs.
The group were asked why it was felt necessary for 4 signatures including the power of attorney, to be required where a care home wanted to give medication covertly. It was explained as the person with dementia was under the care of the home, it was a legal requirement for them to do this even though the medication was essential and hiding it in food was in the best interest of the person with dementia.
A number of issues regarding care records were discussed:
- Carers with lasting power of attorney for health should be able to view hospital and care home records.
- Agency carers providing care in the home should ensure entries in their log sheets are factual ie recording the exact time of arrival and departure as these could be required for legal evidence should the need arise. Family members should review the log sheets from time to time so they can raise any queries if need be.
- Where care is being provided at home by family members, it is not a requirement for a detailed record of the care being provided to be kept. However, it would be good practice to keep a diary of things out of the ordinary eg. if someone wasn’t very hungry or seemed more confused than normal, as this information could be helpful when discussing concerns with health professionals and it would not always be known at the time if something might be relevant later on.
The challenges of keeping track of what is going on where family do not live locally and care is being provided. A carer said she had used the Jointly app provided by Carers UK which provides an online diary and a quick way of writing a message which all people included in the group can see. Read more about the app here.
We finished by discussing hospital admissions and John’s Campaign. You can read more about this in our blog for Dementia Awareness week.
The next Group meeting is on 12th June.
We look forward to seeing you next time.
Janet & Tatiana
Reflections 