Carers’ Group: 12th August

Educational piece

We started with an introductory piece about Resilience and the use of Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT). Earlier this year I took part in a four week course on Resilience and found it very helpful. Many of the ideas used in the course I attended were based on CBT & ACT. I asked the group if any of them might have been affected by anxiety, depression and/or stress – they said yes, so I used the linked notes here by way of an introduction to Resilience. I particularly associated with the bus analogy.

We shall revisit some of the helpful exercises and analogies in later sessions.

Discussion topics

Dealing with difficult family members & realising your limitations

A new member of the group told us about the issues she has been trying to resolve, trying to help and support the needs of her mum with dementia – who is in denial, and their primary carer – her brother – who is also in denial. Her story had several similarities to the issues faced by another, long term, member of the group. Our new member had been doing her upmost, with the support of the doctor, but facing a brick wall. As she put it “I feel like I’m on the beach with my feet in concrete, watching my mum drowning in the sea”. The group was very supportive, as ever. They offered suggestions based on tactics that had worked for them, while recognising – you can only do your best. It was great to see people who had joined the group in a very difficult place now being in a position to help others. Our long term member said to me at the end of the session that she was now aware of how far she had come and how much she had achieved, for her mum, when at first she considered the problems she was facing were beyond her abilities to cope. Her mum is now content and safe in a care home, where her daughter can enjoy her visits. Separately, I also provided the linked information from the Alzheimer’s Society here about people with dementia being in denial to the new carer.

Unexpected developments with loved ones

A member said that his dad had suddenly become more lucid, following some hospital treatment. This was good in that he could make some contact with his dad, but it was challenging as his dad asked repeatedly where his wife was (she died three years ago).

Another member said that her husband had a “girlfriend” in his care home. He sometimes thought his wife was his mother. She was happy that he had found a friend, but said the situation was a little unsettling when the three of them were together.

There was another example of a mum who had become friendly with another person in her care home. For a frail old lady, her vice like grip had proved rather too much for her new friend causing bruises and a carer stepped-in to free her. They are now being monitored by the carers.

Those in the group who have loved ones in care homes often say they feel guilt about putting them in the home (however beneficial and supportive it is). They visit the home as often as they can manage. One member said that her mum purely lives in the present – when she visits, her mum is pleased to see her and they get on well – when she leaves her mum forgets about her. So, while our member is constantly concerned about her mum, her mum is not concerned at all.

Meetings/meetings

We had the latest instalment of another care home on-going saga. Following several issues with one particular member of staff there was a Safeguarding Meeting planned. This was in the same week as a review of Continuing Care Funding. Our group member was preparing for more extended discussions (one of her recent review meetings had lasted five hours). The group reminded her of the need to be fully prepared, have notes of previous meeting, take notes at these meetings, obtain copies of the care home documentation and take the opportunity to assertively push the agencies attending to do the best for her mum.

Day Care for young onset

One carer was seeking recommendations for appropriate day care for his wife, who has young onset. He was considering The Meadows day centre, but had noticed on a visit that everyone was old and his wife would not be comfortable with that. It was suggested he could look at Time Court and we said we would speak to another carer who had found an alternative day centre, to find out where it was. It was agreed this was a difficult situation. In the past his wife had tried the young onset group at Age Exchange, but said she did not like it.

An App

We had a recommendation for a jigsaw app for the iPad, called ‘Magic Jigsaw Puzzles’ which had been popular with one of our group’s loved one. It is free (with in-app purchases). We have not tried it, but the link is here.

 

As always it was a very productive meeting. The new member told us she had never been to a support group before but had found the meeting so beneficial and she would be back next time.

 

 

 

 

 

One Day When We Were Young

One of our Carer’s Group members sent us this beautiful video of her mum, which was selected for screening in the Crafts Council’s Real to Reel Film Festival at Picturehouse Central Cinema in London (3 May 2017). She has given her permission for us to share it. She hopes to film some more.

The video is just over 5 minutes, you can see it here

 

 

 

 

Dementia choir with Vicky McClure

Have you seen “Our Dementia Choir with Vicky McClure”? It really is worth a watch.

Vicky McClure teamed up with the University of Nottingham and specialists from the fields of medicine, music therapy and performance to form a band and choir made up of people with dementia, including former musicians and singers, who rehearsed together for a grand performance.

Most of the evidence concerning music and dementia relates to courses of music therapy. A research review published in 2018, looking at music therapy trials in nursing homes or hospitals, found that the sessions improved symptoms of depression and behavioural problems in people with dementia, but said more research was needed to determine the duration and other effects. Other reviews have found evidence that music therapy can help decrease agitation, and that music therapy is effective for reducing behavioural and psychological symptoms of dementia.

These images from the programme show on the left how Vicky’s brain responded to ordinary noises, such as a steam train and on the right how her brain reacted when she heard a piece of music. The extra activity is due to memories generated by the piece of music.

There is an overview of what happened, with lots of links to useful sites, here.

One of the things that was demonstrated was that when music is played it lights up areas all over the brain as music invokes memory recall.

You may find the two BBC episodes on the iPlayer, or follow the link here. [available to 7 June 2019]

This is one of the reasons why our Friendship Group has an hour for singing (and dancing) each time we meet.

 

 

 

 

 

Carers’ Group: 11th March

How to Seek Calm In Your Busy Day

We started with an information/education piece as promised at the last session. More information and tips here.

Then we invited group members to discuss issues affecting them. As usual we covered a broad spectrum of topics.

Good care

A member, whose wife had recently died, told us of her wonderful funeral service and the large number of people who came. The care home staff had been very good – another member also said how that home (the Meadows) provided a very good service. Both agreed that an effective care home allows you to enjoy quality time with your loved one.

Support for ex-Service people

The discussion moved on to whether there was special provision for ex-service people. Examples of the support available are:

  • SSAFA (the Armed Forces Charity) has joined forces with Age UK in an initiative to improve the lives of veterans born before 1950, their families and carers. By working jointly and pooling resources, they are hoping to build on their shared expertise and create communities where elderly veterans are well looked after and get the help and support they deserve. You can find out more information here. (Greenwich is not one of the project areas at the moment).
  • The British Legion have 6 care homes, 4 of which have some provision for people with dementia. More information here.

Making a connection

Another member highlighted the need for care home staff to be able to build a rapport with the people they are caring for, particularly to understand how to enable them to live the best lives they can. For one cared-for person this meant a regimented regime, another could not cope with choices, yet another preferred a much more relaxed approach to their care. We considered what to do if someone very strongly objected to water on their heads, how could their hair be cleaned without the use of force? It seemed complicated, until a member suggested dry shampoo – this sharing of ideas is an example of the benefits of a mutual support group.

 Perception

A carer’s husband had experienced two different approaches from hospital staff. The first group knew him as a fit and well man, who then developed an illness that they anticipated to be temporary. They expected him to be lively and engaged (his normal approach to life). The second group knew him as very ill and confined to bed. Their expectations were very low, even though his illness was temporary. When members of the two groups met, there was an interesting reassessment of what might be expected following recovery from the illness. It was interesting to ponder on how we react to people based on our perception of their abilities and possibilities.

Deprivation of Liberty Safeguards (DoLS)

We had a lively discussion on the need for repeated DoLS assessments when people move between institutions, the resulting delays and issues arising. There is information here and we shall be revisiting the subject at our next meeting.

Respite care

Two members were taking up respite provision for the first time. We await developments with interest.

 

 

 

 

Lego – coming soon

We are very much group led and respond to feedback, whenever possible. On a recent feedback sheet a member asked if they could have some Lego.

We are able to meet this request! – thanks to the kind and generous donation from our friend and supporter, Cheryl. Our niece and nephew, Amy and Jack, also very kindly donated a small amount of their Lego collection.

Our Lego haul

Depending on its success we will look to source some more – all donations welcome!

BENEFITS OF LEGOS BUILDING BRICKS

  • Lego is a great tool to work with cognitive functions such as identifying colours, shapes, sizes, items, etc.
  • Lego invites creativity into your life. With endless building options. The ideas are endless.
  • Lego exercises motor skills. If you have trouble using your hands then the medium or large size bricks might be more suitable. More about this below.
  • Sitting around a table working a set of Lego invites the social side of everyone to come out and play.
  • A Lego session can promote family bonding. What better way to have some family fun than to open a new set of Lego, find a Lego bargain on eBay, or see what you have stored in your loft. Get as many generations around the table as you can. And, make sure to grab your camera for future generations.

I managed this, while whiling away the time with a cup of tea.

TYPES OF LEGO

Lego comes in various sizes

  • Traditional Lego bricks, marketed by Lego – these are the ones most of us are familiar with.
  • Duplo blocks, marketed by Lego – these building bricks are twice the length, height, and width of the traditional Lego bricks. They are still compatible with the traditional Legos.
  • Mega Bloks, marketed by Mattel. Mega Bloks comes in both maxi (pieces over 2″) and mini size (pieces 1-2″).

Note: Since some Lego sets are typically aimed at younger children I suggest you buy a small box or bag in which to store them. I don’t think most of us would like the packaging clearly targeting young children. Classic Lego sets have the age range on them 4-99 years!

Mr Lego (Ole Kirk Christiansen) was an interesting chap, read more about him here and on Lego here.

 

GPS Trackers

There are a variety of devices that use GPS to locate a person. They could give you greater peace of mind, if your loved one likes to go for a walk. The tracker will link to an app which will enable you to see where they are.

You will need to consider some issues before you buy one. These include:

  • Do you have the person’s consent to use the device? (if they are able to give consent)
  • Is “tracking” in your loved one’s best interest? (not to simply “tag” them for your convenience and who will have access to the information?)
  • Will the tracker be worn? (they come in a variety of forms including – fobs for key rings, watches, and insoles for shoes)
  • Would the device be used? (for example – some have panic buttons)
  • The initial cost (which can be high – see links below)
  • The monthly cost (which may be low, but mounts-up over time)

The Alzheimer’s Society has an article on GPS devices here

You can see a variety of trackers on the atdementia site here

An example of a tracker is below. The atdementia site includes more information. Please note: I have no experience of this tracker and am not endorsing it.

 

 

Yepzon Freedom GPS tracker

The Yepzon Freedom is a safety product designed for people who are active in and outside of the home. It uses 3G, wifi and GPS for accurate tracking.

Activity can be monitored through a free and easy to use app which works on any smartphone. One device can be tracked with several phones – meaning you can make your ‘circle of care’ as large or as small as you choose. The personal alarm button, when pressed, will immediately alert those with the app that you have raised the alarm and they can check your location on the app and respond.

The Yepzon Freedom is especially reliable since it does not have a power switch from which it could accidentally be turned off. In addition, the battery life of the device can last for weeks depending on the user-specific settings. Its small, stylish and has a handy attaching mechanism, making easy to attach and take with you anywhere. It is shock and spill resistant.

The product comes with built in SIM and 5MG worth of data (approximately 1 month of average use). There is a cost for the ongoing data according to usage; the app is free to download.

Coping with Christmas

Christmas can be overwhelming for many of us but when someone in your family has dementia, this brings different challenges that are very easy to overlook.

Here are some useful tips to think about in the lead up to the festive season (everyone is unique, and you know your family member best, so consider which ones apply).

  • Put decorations up early and slowly. Take a few days or a week so it doesn’t come as a big change to a person’s usual setting
  • Try to spread family visits out, as large numbers of guests and lots of noise can be overwhelming.
  • Create a quiet room, where the person with dementia can go if things get busy. To avoid confusion and anxiety, a cup of tea can be offered away from the bustle and if the loved one wants it, sit with them and chat. Some people with dementia can find large groups overwhelming and can struggle to take part in fast moving conversations. A little separate one-to-one time with family and friends may be better. The person with dementia often values and benefits from gifts of company more than material gifts. The gift of your time is a precious thing.
  • Try to keep a routine — keep meal times at the same time so your loved one can relax, get up and go to bed at the same time
  • Play some familiar old Christmas music and look over old photographs.
  • Photographs can be useful because people with dementia may be living in a different decade. It is common for people to believe they are at a younger point in their lives. If this is the case, use older photos to explain who people are – and don’t get upset if you’re your loved one gets names wrong.
  • Communicate essential changes with family and friends, so they understand what’s going on.Look after yourself and ask for support – a little respite from family and friends can be invaluable so you can enjoy the season too.
  • Think of activities that friends and family can do with the person with dementia and everyone can enjoy.
  • Encourage your loved one to take part in the cooking preparations for Christmas. They will feel useful and it can start conversations about Christmases past (your loved one’s child hood Christmases as well as yours). Reminiscence is vital to increasing wellbeing.
  • At Christmas lunch:hand out crackers when you are going to pull them, limit the amount of crockery and cutlery on the table and use a tablecloth that contrasts with the plates. White-on-white blends in and the person may not know where the plate ends and the cloth begins. Many people with dementia struggle to eat so sitting down to a plate piled high with food can be very off-putting. Instead, make sure they’re given small portions of food they enjoy. If this means they don’t eat exactly the same as everyone else, that’s fine. If they’re still eating the main course when others are tucking into Christmas pudding, that’s fine too, providing they’re still enjoying it.
  • Opening presents: Give the person with dementia time to open the present without feeling rushed. Offer help if needed but don’t try to rush them. If the person does not want to open it yet, that’s fine too. Leave it until later. A person with dementia can become stressed if they feel everyone’s watching them, so keep present-giving calm and casual.
  • Watch out for tripping hazards. Presents and wrapping paper scattered all over the floor can be dangerous for a person who’s frail and prone to stumbling.
  • Practicing religion: If your loved one has always gone to church on Christmas Day, there’s no reason to stop now.
  • Make sure the list of emergency contact e.g. doctor and pharmacy numbers are up to date and don’t forget, just because someone is living with dementia doesn’t mean they can’t join in the fun.

Don’t try to make Christmas totally perfect – you’ll just create more stress for yourself. Instead, try to keep it real, and if things go wrong, try to keep it in perspective. Then when it’s all over give yourself a big pat on the back for trying so hard and doing the very best you could.

Tatiana

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.