Our work with people affected by dementia and their carers to better understand what support is available and whether this meets their needs

Thanks to people sharing their experiences of managing dementia during the pandemic we have a rich picture, rather than data alone, to challenge assumptions and identify issues for the NHS and social care services to improve.

As we became aware of the impact the pandemic was having on those who have dementia and their carers, we made it one of our priorities to find out more in 2021-2.

Initially we had spoken to people at Regenerate Rise, a service that people with dementia and carers can attend, but they do not provide specialist support. Their views informed our understanding of where we needed to look further.

What we did

Over the last year, we have been involved in several activities that have enabled us to capture the experiences of these people affected by dementia in Wandsworth.

Dementia will continue to be a priority for Healthwatch Wandsworth in our next year and we look forward to continuing working with groups, shedding more light on the issues faced, providing information on what support is available, and reporting on developments in support for carers. As well as exploring practical and digital technology solutions to support their daily lives.

We have started to share information about services to support people affected by dementia because this was a key concern of people we spoke to. This should help people access support locally. The website can be found here.

We also spoke to Albert, who shared us his story in detail. Please do read on to the end of this page to find out more.

Alzheimer’s, Little Grey Cells – Service User Support Group, November 2021

Little Grey Cells was a support group for those who have dementia and are a service Alzheimer’s Society offers in Wandsworth (this group is no longer running).

We visited one of the support groups in November 2021, within a window where Covid restrictions were lifted, and managed to speak with the four of the people who attend. Unfortunately, we were not able to do any further engagement after this session due to the suspension of the group.

We discussed how they have accessed Health and Social Care services over the last 12 months, explored the benefits of attending the Little Grey Cells support group, and the attendees shared useful techniques to help people to remember things.

Feedback from people in the group

Getting support:

  • “Before I found the group, I didn’t know what was available, it was my doctor who told me about the group.”
  •  “I don’t use the internet as I find it hard to access services online.”
  •  “My doctor sends me a reminder of their appointment, which they find helpful.”
  • “I like coming along as I like listening to people and it is a pleasure coming along and talking to people, I was a nurse previously and had to leave my job as couldn’t work anymore. I like coming here because I can choose what I to speak about and I like the company and the group is a great help to families.”

What it is like to have dementia:

  • My Alzheimer’s is getting worse, “I can’t recognise my grandchildren and it has taken some time to accept this.”
  • Cooking involves a lot of processes, and you can lose what you are doing, “I forgot how to make my porridge this morning.”
  • All of the people in the group use the telephone to keep in touch with their family and friends.

Getting continued support:

All of the people found it difficult during the lockdown and when they were unable to go to the support group. The Cognitive Stimulation and Live Well with Dementia support group also came to a halt during Covid, and the Alzheimer’s Society is unsure when they will resume. Most of the people we spoke to do not attend other day or support groups, except one who attends a coffee morning and they find this enjoyable. 

It also appeared that the people in this group were not aware of other services within the Borough. We discussed this with the Alzheimer’s Society Support Worker and agreed to look at producing a leaflet or an updated list of information. We also identified that people would benefit from tips on how to set up reminders on their smartphones and useful apps that can help with memory issues, one of the clients mentioned Car Find (which helps you to find where you parked your car). 

Alzheimer’s, Side by Side – Carers’ Workshop, February 2022

Carers of people with dementia have had support from a wellbeing practitioner because in discussion with a support group, it became clear during our conversations that this could be helpful.

Side by Side support group is an opportunity for carers to share the experiences of caring for those with dementia and how this impacts them, it also offers mutual support and a sense of “we are all in this together.” The group meets monthly online and is attended by a mixture of both Merton and Wandsworth carers. The group facilitates a safe space online for carers to speak about the issues they face on a day-to-day basis.

We spoke with 8 carers in the workshop, we wanted to understand the impact of the pandemic on carers, we had a general discussion, went through Healthwatch Wandsworth’s Health & Social Care survey questions, and concluded with a relaxation session.

The group told us the following about their experience of using health and social care services.

Merton Dementia services:

  • One person told us about their experience with Merton Social services, “they are a waste of space, I received no help at all.”
  • One person said that both of their parents have dementia, their father has deteriorated enormously during the pandemic and their mother is the carer at the moment. They felt that the support they received from Merton Social Services was not too bad until there was a minimum amount of money, and they withdrew their services.

The group facilitator explained that different boroughs offer different support, for example, Wandsworth Carers’ Center offers 50 hours of rest bite a year and Merton does not offer rest bite.

Experiences with GP practices:

  • One person told us that access to a GP in Merton hasn’t been too difficult. One issue they had with their mother was having a GP she knows and with whom they can focus on the various conditions she has.  “It would be nice to have consistency as she doesn’t have the confidence to speak to different doctors as it brings confusion, and all the letters cross over.”
  • One person felt that it was common for the GPs not to listen to the carer and listen more to the person who has dementia.  ‘When I take my mother to the GP, she turns into a fairy godmother and does not focus on why we are there.’ They didn’t think the GP takes on board the other side of the story, the person who knows them best and carers or them.
  • Another person talked about their experience with their GP in Wandsworth since the pandemic. They said they find it difficult to get an appointment, prior to the pandemic they used to get seen straight away, but it is more difficult now.
  • One person commented on the experience she and her mother has had with a Wandsworth GP; they had various assessments and have a carer who is good. They thought that the GP has been prompt, even though the interaction has been 1 to 1 on Zoom.
  • One person explained that her experience with the GP is hit and miss, I would ask for an investigation for my mother and then whatever I ask for my mother says the opposite, because of her dementia my mother thinks I am still a child. “My mother won’t listen or take any instructions from me as she thinks I’m still a child not her carer and forgets that I know her best.”  They said she will listen to the GP and the GP does not listen to the carer but rather their mother. It makes things difficult.
  • One person said that they were registered as their brother’s representative and have power of attorney and the GP is good. They said the communication with them since their brother’s diagnosis has been good and the GP is great at responding asap or face to face.
  • One person said that they are registered as a carer with their GP and their doctor sent them a text for a carers check-up. They are still awaiting the appointment.

The group facilitator reminded the group that they should be asking GPs for an additional 10 minutes at the end of the appointment so they can get their point over and share their concerns with the GP.  GPs should be giving carers extra time if they are registered as a carer, it is important that they register as a carer.

Experiences with social care:

  • One person said they receive 2 hours rest bite on Tuesdays which they value ‘The rest bite I receive is very important for my sanity, as I can have a talk with friends or the family. I have to appear normal in front of my husband even though I feel depressed.’
  • One person said that Wandsworth Social services used to provide them with a carer support for two hours a week and recently this has been reduced to one hour per week.  “I would like it if there was a service where carers could be on call in the evening, as I need support at this time.”
  • One person said they have a chronic back condition and had a stroke in April 2021. They have a carer to come in to help them take medication, cook, and take a shower.  “I had no issues getting the support I needed after my stroke, however, with my husband’s dementia diagnosis it was not automatic and been a real struggle.”  They are the carer for their husband and have to take him to hospital visits and they find it a real struggle.
  • One person said their mother has dementia and cancer, a dementia specialist nurse gave her an assessment and a referral to Wandsworth Social Services. “I am still awaiting a decision, but have found that social services within Wandsworth are not helpful at all.”  The specialist nurse and team had to follow this up and provided them with a list of resources and support – they made this their priority.
  • One person cares for their mother; they were abroad when their mother got her diagnosis and had to return to the UK for an assessment with a social worker.  “The social worker didn’t even turn up as they had a family issue themselves and forgot they had a meeting.”  They were upset as it took a lot to get their mum up and ready for the visit and they felt under pressure. The social worker called them on a Saturday morning and tried to reschedule the visit on the Saturday before they commenced annual leave. They said they felt under pressure and did not want to be rushed, so they had to tell her not to call at the weekend.  
  • One person who cares for their mother who was in St George’s Hospital said that the hospital allowed her to stay with her mother all day as she had a funny turn and collapsed. When she was admitted the carer told them that their mother had dementia and asked them to put the butterfly badge above her bed and on notes, but they didn’t do this.  “I go every day to look after my mother as she has deteriorated. I bring in my own food to feed her.”  They said that the shower is not working in the ward, and they are short of staff, they can feel the pressure as the nurses are working so hard.
  • One person who cares for their husband who is housebound and has bowel and urine incontinence. They told us it is difficult to look after him as they cannot lift him to the bath and must use baby wipes to clean him and it can take around 2-3 hours a time to clean up. They receive support from a carer twice a week for half an hour, the carer encourages their husband to do exercise.
  • One person said that they provide care for their brother who has dementia, because of his finances he does not qualify for any help. This all happened during Covid, and they felt it was a stressful time. They found Age UK to be supportive, ‘Age UK was very helpful, I had no idea what to do and they provided me with an adviser to help and arranged support, as well as Alzheimer’s Society.

Everyone in the session mentioned an impact on their mental well-being in one way or another.
People mentioned an impact on:

  • Lack of sleep
  • Anxiety
  • Feeling sad, upset, teary or emotional
  • Grieving
  • Feeling guilty
  • “I care for my brother, but I don’t live with him, and whenever the phone rings I jump out of my skin and get rattled and upset.”
  • “I become emotional as I feel I am losing my father.”
  • “You are experiencing grief while the person is still with you.”
  • “You become the parent and I do cry at times.”
  • “The guilt of not always being there is erosive to your health.”

Additional support that they would like to receive from services:

There was a difference in support available between boroughs. There was a perception that Richmond and Merton appear to offer more support and resources for those who have dementia and carers. 

  • Four carers suggested more rest bite, “if you received one week a year to go on holiday or visit family that would really help.”
  • Others suggested more availability of support groups, “We need more support groups like this one. This kind of support group and the personal support from Alzheimer’s is a constant that can support us and helps us understand what is going on with this experience. It is an uncharted journey, and it would be great to have more equivalents and help as you make your way through your path.”
  • Currently Wandsworth Cares' Centre peer support groups are not currently in working hours so many people cannot attend.”
  • One person said that they would like more support workers in Wandsworth, as currently there are only two people in Wandsworth and five support workers in Merton.

Albert's story

Albert, who attended Little Grey Cells, has dementia and agreed to provide us a case study to help us understand what it is like for someone living with dementia.

Although we do appreciate that each case will be different due to levels of support needed, personal circumstances and where they are on their journey, Albert’s story shows us why support services are important to him and some of the ways that the changes in support available, or information about what is available to support people, has an impact on his wellbeing and living life. Some of Albert’s story begins before the pandemic, after which others have told us that it has been difficult to get support in the usual ways. His story also reflects what people have told us about access to things that are digital.

Albert’s Journey with dementia

We spent time with Albert to explore his journey from being diagnosed with dementia and beyond, we discussed the support available and the impact this has had on his working and social life, and quality of life.

Albert is 78 years old and lives alone, he was diagnosed with dementia six years ago. Albert was knocked down by a car sometime in 2009 and landed on his head and from then on, he noticed that he was losing his memory. Firstly, he noticed that he found it difficult to get home from places. 

He went to the doctor and told him what was happening with his memory loss and bad dreams and the doctor made a referral to the hospital.

Albert’s situation became critical when his manager had to draw to his attention his forgetfulness and so Albert approached a social worker. Someone from Wandsworth Council came to assess Albert and after a while, he got a letter from social services telling him that he would get a carer.

It took almost 8 months for Albert to get his diagnosis. Within that 8-month period, Albert found out about the Little Grey Cells support group. He spoke with someone from Little Grey Cells and told them that sometimes when he goes shopping, he forgets why he was there. They understood and gave him tips to help with shopping, for example, they told him to write down where he is going and what he wants to buy before he starts his journey and takes that with him, Albert has found this helps.

Support for day-to-day living

Albert is living independently and has a carer who visits to give him breakfast and helps to prepare an evening meal and clean the kitchen. He has had a carer for almost five years and is happy with the support he receives. Albert’s daughter and nephew cook his food so that he can freeze this for the carer to prepare.

Support to maintain wellbeing

Albert has received support from Little Grey Cells. He enjoyed going to the support group every Monday, but this stopped for a while during Covid. He liked to go there as he meets other people and gets to hear about their experiences, “this helps to pick my spirits up.”

Albert also attends a weekly residents’ coffee morning. They started these meetings during Covid and have continued, Albert likes to go there to meet people and socialise.

Albert also receives support from his daughter and nephew who cook food for him and provide emotional support.

He also has a carer who does the housework and helps to prepare meals.

Impact of dementia on day-to-day living

Albert told us that sometimes his memory loss is great and “he has become afraid to go out in case he gets lost.”  He remembers once he managed to get to Esher and doesn’t know how he got there, as there is nothing there for him. He said he was lucky that a good samaritan brought him back home.

Albert told us that his life is nothing like it was before. He has had to slow down and is not as active as he used to be. 

Albert explained, that before his diagnosis he worked for Cadbury’s for twelve years until he was made redundant. He then worked for himself as a cab driver but had to give this up due to his diagnosis.

He misses meeting people as he was always an active person.

Albert also goes to church on Sundays but “before I even get home, I have forgotten what the vicar had spoken about that day. Sometimes when I read the bible, I cannot understand it anymore.”

Albert is trying to build up a social life with old friends from Ghana, they meet for a few hours weekly, and he enjoys this as they discuss the people, they knew that have now passed away, they also talk about his home country, Ghana.  Albert would like to go back there in three years’ time as he does not want to die in London.

Impact of the pandemic

Albert told us that the pandemic affected him a lot as he could not go to the Little Grey Cells support group for a while. It opened again for 3-4 weeks and then stopped again. 

The coffee morning on Albert’s estate also stopped.

He felt so isolated and lonely as he couldn’t meet people. Albert told us that when he felt lonely, he would go for an hour’s walk to help him get over it, he did this to help himself during this period.

Albert's Tips

Albert finds keeping himself busy, support from friends and family and the Little Grey Cells support group helps him to manage things “it stops him from thinking about things and getting depressed.” 

What next?

We will continue to find out more about services available for people in Wandsworth.

We would like to hear from young carers looking after people with dementia as well as exploring practical and digital technology solutions to support those with dementia in their daily lives.

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