Category: Carers Group

Janet and I discussed the highlights of the Alzheimer’s Show

Janet had taken the virtual dementia tour and found it well planned, interesting and prompted many insights into the way some people with dementia may perceive the world. We would recommend you take a tour, even if it is only a condensed version, as at this show. You can see a You Tube video about a tour here (video by Leeza’s Gibbons from the USA).

We discussed the Playlist for Life the Call to Mind game I mentioned in my show blog here. The group was interested in the idea of an individualised musical playlist based on tunes that prompt positive memories. Each member had examples of how the person they cared for had enjoyed music and how it often led to conversations about their past. We plan to use the Call to Mind game at our Friendship Group.

Group discussion

We talked about the difficulties of working with some care home staff who don’t always see those-in-care’s well-being as their priority. An example was where a group member’s mum was left in bed even though she could walk with help. The staff member said the care plan indicated she should be kept in bed – this plan was from a previous home, which had not been updated in the light of her physiotherapist’s view that she could and should walk. The member of staff also said the carer’s mum could be violent and needed more medication – the daughter knew that her mother needed to be encouraged and persuaded to do things – a skilled carer could cope and, after all, the home was being paid to deliver care for her mum. Being confined to bed results in wasted leg muscles, difficulties in balance, and frustration leading to aggression – not in anyone’s interest.

We also noted the need to always keep your own notes when dealing with just about everyone. Doctors, hospitals and care homes rarely keep their notes as well as they should (and sometimes lose them). Keeping note puts you in a stronger position and helps avoid mistakes.

A group member’s wife was about to have a respite break for the first time. The member had done his research and was hopeful the break would do them both good. Sadly, because the wife cannot travel long distances, she will miss her daughter’s wedding. His only reservation was that the home required her to have a two-week respite break and would not offer anything shorter.

Another carer’s dad has been in what he feels is a good nursing home, with no turn-over of staff in the nine months he has been there. As a result, they are both calmer and able to enjoy positive time together.

 

 

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.

 

 

 

 

 

 

Eight of us had another set of lively discussions.

Prior to the meeting kicking-off, some informal chats between individuals highlighted the benefits of counselling – several of the group had positive experiences. We always emphasis the need for carers to look after themselves and this may take a variety of forms. Talking therapies can be very helpful, especially when people find it difficult/inappropriate to say what they think/feel to those immediately around them. A release valve helps keep pressure under control.

We mentioned GPS tracking again. One carer told us her husband had recently gone for a walk in the middle of the night and she did not know where he was. The tracker found him in Stratford! – there is more information on trackers here.

Members agreed that, whatever plans you make, there will always be the unexpected to deal with. A longstanding member described her recent first efforts to find some suitable respite care for her mother – a suitable home was found, it looks just right, all that was needed was a visit to assess mum would get the support she needed – on the way to the meeting the assessor was called back, at no notice, due to a snap inspection from the powers that be. We await further developments.

A couple of members said they had to deal with the person they cared for thinking they needed to go out, even when they had just arrived somewhere. This even affected someone at our last Friendship Group! We discussed distraction tactics such as: getting ready to go out (hats/coats/bags etc), walking as far as the front gate, then brining up the bad weather etc. Tactics and techniques helped to diffuse the situation, but “Sundowning” often made the issue worse.

A lovely story from one of the group. She had been to visit her husband, who often doesn’t recognise her. He had taken her hand and kissed it when she arrive. It made her feel special… Then a member of staff came along, and he did the same to her.

Getting the right care from care agencies can be difficult. Sometimes there is a disconnect between the agreed and expected service, and what actually happens. A paid carer who asks for ideas and guidance from a person expecting a break from their daily routine is not what might be expected. The group recommended a quick escalation of concerns with the care agency is necessary to ensure a suitable service is provided.

Group members who have a history of caring for relatives said how sad they were that there seemed to be considerably fewer services available these days. While this may be true, there was quick support for the work of Time Court and The Meadows (both Sanctuary Care), and Age Concern Chislehurst.

We usually have a convoluted story of issues arising since our last meeting. One that was described this time could be summarised as a nightmare hospital stay (including a urine infection that turned so bad that the patient ended up in re-sus, and two bouts of the Novo virus) followed by a placement in a “care” home that culminated in a 5 hour meeting where the social worker was in despair about the lack of care provided and the absence of “care” records. Again, we await developments.

The group revisited the need for Lasting Power of Attorney and the benefits of Lasting Power of Attorney for Health and Welfare.

Janet mentioned the benefits of signing-up to the Alzheimer’s Society Talking Point On-line Community.

Towards the end of the session we talked tactics regarding visits to the doctor and/or specialists. The professionals have very little time and need to make decisions based on the evidence presented to them. It may help to provide background to someone’s circumstances and state of mind prior to a session that might otherwise go like this: Doctor “Are you ok”. Dementia patient “I’m ok”. Doctor “ Wonderful. Don’t hesitate to make another appointment, if you feel unwell” Carer (while being ushered out of the surgery) “But…”

My short discussion topic “How to seek calm in a busy day” has been put on hold until our next meeting, but for anyone who can’t wait the essentials are here.

The first Carers’ Group of 2019 proved to be a well attended and emotional event.

We welcomed two new members, including one who comes to our Friendship Group.

Given the numbers we asked for issues that people were keen to discuss, allowing them time towards the end for any additional topics.

Finding good care-in-the-home providers 

A regular subject for discussion, but one that does not have a simple answer. The group suggested using contacts, personal recommendations, searching on-line and reading the Care Quality Commission reports and guidance (see here for their site).

Social Services will complete a care assessment for adult support on request. This is a key first stage in both finding and accessing services, and discovering what financial support (if any) is available. More information here.

A carer also has the right to a carer’s needs assessment on request see here.

If you are being supported by Oxleas NHS Foundation Trust you may find details of their services here. You will see they have a care planning service (mental health) which is separate to the Memory service

When is the right time to look for a Care home?

Group members who have loved ones currently in care homes provided their personal experiences of when “the right time” arrived for them. This is a very emotive subject and members were emotional when discussing this life changing decision.

We had several, very positive, examples of how people had moved into care homes. There still remained a huge burden of emotional issues to deal with for someone who was still alive but “no longer there”.

A helpful perspective was that people in care homes could flourish and also still have days out. If a home did not suit the person they could change it for a different one. It was also possible, for some, to return to their homes.

The emotional impact of sudden changes in a loved one

How do you cope with a situation where someone is fit and healthy and, suddenly, they are rushed into hospital – are later transferred into a care home – and now may never return home? Or, your loved one suddenly becomes extremely threatening and violent and is taken immediately into care?

The group gave members the chance to say how they felt, what it meant to them and how their lives had changed.

We discussed support from family and friends and counselling. 

The NHS have information on counselling here. As this is a “talking therapy” it depends on openness and honesty.

Greenwich carers’ centre (The Stables, at Charlton) provide mentoring and counselling support. More information here.

GPS

And finally, we discussed GPS trackers – see my post here.

 

On a cold night at Shrewsbury House, we were pleased to welcome three new members to the group. Each member had the opportunity to discuss an issue that was affecting them. As usual there was a wide ranging and lively discussion.

We started with the issue of anxiety for someone with dementia. The example was of someone continually saying they wanted to go home (even though they were in their current home). Some tips are here.

A member commented again on the enjoyment her mum had found in participating in an intergenerational group – the rather young paired with the rather old. The BBC have recently looked at this in ‘The Toddlers Who Took on Dementia’ see here.

A new member told us about the successful work of arts groups with people with dementia. She referred to the Wellcome Trust’s work ‘Created Out of Mind: shaping perceptions of dementia’ They say: “We aim to reaffirm the value of people living with dementias and their individual experiences. Taking the lead from conversations with people who have dementia, we want to enrich current perceptions and representations of their experiences. And we want to demonstrate the power of the arts in communicating the personal stories and scientific realities of dementia – a more powerful medium than any blood test, brain scan or histogram.” More information here. She also pointed out the work of Arts 4 Dementia. You can see more information here. We hope for more interesting input from this member, as she is studying for a PhD looking at how crafting can help carers and those they care for with dementia.

You might also be interested in an online course covering dementia and the arts, recommended by Angelika (the Greenwich  Dementia Action Coordinator). The UCL course is – ‘Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives’ – more information here. The online host Future Learn (a private company owned by The Open University) offer a selection of on-line courses about dementia see more here

We heard from another new member about the work Age Exchange in Blackheath does with crafts. You can find out more about their services here.

Our discussions then moved onto behaviour that we may find difficult: anger, refusal to eat/drink/take pills, and aggression. For one carer difficulties had come about because her mother refused to cooperate with a physiotherapist. The issue seemed to be that the therapist wanted to visit in the morning and the mother was not a morning person. Our view was that the afternoon should be tried, as mum really would definitely benefit from some activity. Perhaps the physiotherapist could fit-in with the patient’s timetable, rather than vice-versa. The second example reminded us of a previous session. The individual was talking to ‘someone’ in the mirror, between the ‘two’, they were working ‘themselves’ up to the point of aggressive action. We discussed the need for a review with the specialists, as this sounds like a symptom of dementia with Lewy bodies. More information here.

We discussed the highs and lows of care homes. Fortunately, several of the group have had positive experiences with local care homes. While there is much to recommend, carers need to be mindful that choosing a good home can be difficult. A starter checklist is here.

At the end of the year we encouraged the group to look back and focus on the things that had gone well. It is too easy to concentrate on the negatives but, as we have found from our discussions, each group member has done so much to be proud of in their caring role.

We gave members a handout for ‘Coping at Christmas’ prepared by Tatiana, see here.

This was our last group for 2018 – we wish all our carers a peaceful Christmas.

 

Some good news, the daughter of one of our group has just had twins. Congratulations!

The discussion was as wide ranging as ever. A couple of issues to reflect on:

The group discussed the benefits of visiting care homes well in advance of signing-up as a resident. The prospective client should be clear that their needs can be catered for. An unannounced visit to a care home often gives a more accurate view of the home than a planned one. It helps to understand the financial implications and how best to manage your money. Speaking to a solicitor is a wise move; some offer free initial consultations – for example Clarkson Wright & Jakes

The group all had experiences of visiting Accident and Emergency at their local hospitals. The consensus was that A&E should be avoided, if possible, due to: the noise; amount of waiting time; colourful characters etc. etc. all inducing stress. Unfortunately, visits can be necessary and hospital stays may be needed. We re-visited John’s Campaign – “for the right to stay with people with dementia – for the right of people with dementia to be supported by their family carers – 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 next session we shall be reflecting on the achievements of the group members in the last year and what they have learned.

 

We welcomed a new member to the group this evening. We had far ranging discussions, on a variety of topics, as usual.

• Our first speaker highlighted some of the difficulties of coping with your own issues while being a carer. Our friend had  six hospital appointments in one week, giving rise to stress and seemingly endless travel and delays while waiting to be seen. Added to that, letters mistakenly demanding money contributing to anxiety. The need to take the person being cared for to a tricky hospital appointment is “just” another layer of stress.
• The second speaker thanked Janet for raising points about reviewing a diagnosis, when experience raises questions about the type of dementia a person has. Their mother had returned to the memory clinic and had been told she actually has Vascular dementia and Lewys Bodies, with a possibility of Alzheimer’s – instead of Alzheimer’s with Vascular dementia. The key result is that the medication has been changed and their mother is much calmer and less prone to hallucinations.
• Our new member discussed the issues his father had with being moved out of a care home, into hospital and then into a new home with continuing care payments. We have discussed the financial impact of care in previous sessions. The NHS provide guidance on continuing care funding here.
• The final discussion was around changing reactions to living at home with a fluctuating number of long term (family) guests. Whereas, in the past, the person with dementia had been happy in a lively family environment, now they had difficulty keeping-up with conversations and keeping track of who was who. A quieter home might be the answer, but husband and wife living just as a couple would be a big change for both of them – would it work? would they be bored? Recognising and coming to terms with the “new normal” is a challenge.

 

I then presented the following, before our regular 10 minute meditation session.

Benefits of reminiscence therapy for dementia

Reminiscence therapy can give people with dementia a feeling of success and confidence because it’s something they’re still able to do. It gives them an opportunity to talk and share something meaningful rather than just listen.

Talking about happy memories of the past also brings joy, which is especially helpful if someone is having a hard time with everyday life – it helps them cope with stress.

The difference between reminiscing and remembering

Reminiscing is not the same as asking someone to remember something from the past.

Remembering something specific, even from long ago, can be stressful for someone with dementia because they’re likely to feel pressured or put on the spot. In contrast, when a pleasant memory floats up and they share it with you, they’ll feel good.

For example, a pwd might not remember right away when you ask even a simple question like “Where did you grow up?” But if you’re looking through old photographs, they might spontaneously say “Oh look, there’s my house. My mom baked my favourite cakes every Saturday. They were so good.”

What to do if reminiscence brings up painful memories

You never know which memories will come up when reminiscing about the past. Sometimes a painful or unhappy memory will surface. This isn’t necessarily a bad thing, but you’ll need to respond with kindness and understanding.

You know your pwd best so if this comes up you’ll have a better idea of whether it’s best to listen and offer support so they can feel better by telling the story or if it’s wiser to kindly steer them toward a happier memory so they won’t get stuck in a sad, distressed state.

How to make reminiscence therapy successful

The goal of reminiscence activities is to enjoy time together and set the stage so your pwd has a chance to talk about any memories that come up.

For best results, plan for a time of day when they’re most interested in activities, maybe earlier in the day. Choose a quiet, comfortable location where they’ll be able to hear and see you well.

If your pwd doesn’t recall any memories during the activity, that’s ok – maybe nothing came to mind at that moment. You could offer comments about yourself that might help spark a memory for them (like “This reminds me of going dancing”), but there’s no need to pressure them. With or without reminiscing, they’ll still enjoy these activities.

4 reminiscence activities

Memories can be associated with different parts of the brain, so it’s helpful to try activities that stimulate different senses. This is the time to use your imagination and get creative.

1. Listen to their favourite music
Music helps people reminisce and relate to emotions and past experiences. That’s why it’s often recommended for those with dementia. Music can even reach pwd at a very advanced stage.

You can play their favourite songs, have a little sing-along, or play music on simple instruments like shakers, bells or tambourines, or a DIY drum.

2. Look through photos or keepsakes
Pictures or keepsakes that bring back memories are another excellent way to reminisce. Photos of family, friends, and important life events are always good choices.

Photos of things that remind them of favourite hobbies are also great. For example, someone who loves to garden might enjoy looking at a gardening magazine or plant catalog. Someone who loved to cook might like a gourmet magazine with beautiful food photos. The same goes for sports, crafts, historical events, etc.

3. Smell familiar scents and taste favourite foods
Smell is a powerful way to access memories. You could create scent cards or jars with smells that remind them of favourite foods (use spices) or a location like a pine forest near their childhood home (use fresh pine needles or pine scented sticks.

Taste is another way to evoke fond memories. Maybe they always made a special dish for holiday celebrations – you could make it for them and reminisce while eating together. Or maybe you could recreate a favourite snack they made for you as a treat when you were young.

4. Enjoy tactile activities like painting, pottery, or other crafts
Touch can also remind someone of the past. Familiar tactile activities like drawing, painting, pottery, knitting, sewing, or other crafts can spark old memories. Even if they can’t participate in these hobbies anymore, doing things like touching paintbrushes, swirling watercolours, scribbling with drawing chalk, squeezing yarn, or playing with fabrics can evoke strong memories.

Another way to use touch is through objects. Maybe wearing or handling favourite pieces of jewellery or accessories (like a watch or a necklace) would bring up memories of significant life events. Other ideas would be to bring out a significant piece of clothing (maybe a dress or suit) that they use to love or wear to important events.