In 2022, thanks to a small grant, we were looking at ways to reach people who hadn’t heard of us before.

Having worked in various suburbs in Nottingham we were aware that there are people across the city who need support, so we decided to try hosting a drop-in morning in Nottingham city centre.

Following the success of the first session held in November 2022 when ten people came, the drop-in is now running once a month.

Location, location, location

Nottingham has a great public transport system, with reliable buses and trams that connect in the city centre. But where could we host a drop-in, that would offer a safe, accessible space, drinks and cake with an element of privacy, all at a price we could afford?

I knew of a community enterprise in the city centre so I approached them to see what space they could offer. Tiger Community Hub has a café space, a shop selling upcycled products alongside practical homemade items and runs a variety of craft and self-help sessions.

Tiger is well placed for public transport links and a nearby street offers Blue Badge parking. Their activity space has a kitchen table style layout that was exactly what I was looking for. Toni, the brains behind Tiger, offered us a great deal and I booked in to host the first drop-in there in November 2022.

Spreading the word

With the venue and date set, the next challenge was to spread the word. Previous experience of promoting dementia related activities has proven that it’s necessary to do a little bit of everything so that’s what I did.

Traditional posters and fliers delivered to community venues including leisure centres, GPs, libraries and places of worship, both in the city centre and in various suburbs, worked alongside social media posts on Facebook and Twitter.

I’ve been on local radio and even had a stall at a dementia-friendly panto performance at Nottingham Playhouse. Oh yes, I have!

Tiger have been great at spreading the word too. They promote all their events on Facebook and Twitter and have added ours to their calendars. They also have a poster in their window. But most helpfully, they talk to people who come into the hub and, where appropriate, encourage them to come to the drop-in.

Whilst the need for promotion has slowed now the drop-in is established, I still look for opportunities that will help me to reach new audiences. This has included connecting with GP alliances and social prescribing networks on Twitter and presenting to the Health and Wellbeing Hub team who run information and advice stalls in community settings across Nottinghamshire.

The work pays off

From the first drop-in in November 2022 to the most recent one in March 2023, I’ve been heartened by the response I’ve had. 15 people attended the most recent drop-in. Although different people come each month, a core group seems to be emerging. It’s encouraging that people come back month after month as they must be finding the sessions enjoyable and helpful.

We have a mix of people coming including people living with dementia, sometimes with their partners, as well as family members and friends. Sometimes people we’ve known for some time and who’ve engaged with other activities we’ve run come, but mostly the drop-in is attracting people who’ve never heard of Trent Dementia before.

With no set activities, the drop-in provides a space for people to chat over drinks and food. I greet people, find out a little about their circumstances and encourage them to leave contact details if they’d like to. I also link people up to talk about similar experiences such as taking on the household finances once a partner becomes unable to manage them anymore and offer information on other groups and services in the area.

Trent Dementia’s approach is to respond to the needs expressed by people affected by dementia. To do this, we must listen to their experiences. What the drop-in has proved (as we already knew from other services we offer) is that space to meet with other people and talk is the most valuable thing we can offer. People express feelings of isolation, loneliness and the challenge of adjusting to how life looks now. They appreciate the sense of community that attending groups like the drop-in gives.

“Coming here today and talking with other people has made me realise that my partner’s condition is quite progressed and being in the care home is the right thing for them” Partner of a person living with dementia who has recently moved into a care home.

“I’m still trying to work out what my life looks like now” Partner of a person who was living with dementia who died a few years ago.

It’s fair to say that the food – soup, bread and cake – is well received too.

The benefits of working with Tiger

Working with Tiger has been great for the drop-in, for several reasons:

• Promoting the drop-in – Tiger promote the drop-ins, in person to customers and on social media. One person has come after seeing the poster in the window and another comes following chatting with Toni in the café,
• Offering a warm (literally and figuratively) and friendly welcome – the Tiger team are the first point of contact as people arrive, signposting people to the activity space,
• Providing two to three extra pairs of hands – as the only paid person at the drop-in, things can get hectic for me, so having the Tiger team on hand to deliver drinks and food really helps,
• Food and drinks all sorted – it’s great that we can offer a free meal to people at the drop-in and Tiger provide excellent, great value food,
• Space to overflow – given the numbers attending, the drop-in can get quite noisy so it’s great that there’s the café space to overflow into which can provide a quieter place to chat in smaller groups,
• Opportunities to collaborate – in January drop-in attendees decorated glass jars to be part of Tiger’s Light Night installation and I’ve joined in networking events held in the venue.

Summary

From the number of people attending the drop-in and the number returning each month, several things are clear.

One, meeting in a city centre venue works. People are happy and able to travel into a central location thanks to the good transport links Nottingham has.

Two, there’s a need for people affected by dementia to meet, to share experiences and concerns and to be heard by others.

Three, sessions like the drop-in give organisations like Trent Dementia the opportunity to gather shared experiences of the everyday impact of living with a dementia diagnosis. These can be used to inform and educate interested audiences such as those newly diagnosed, healthcare professionals and service providers.

Four, working with a local community hub has huge benefits outside of hiring the space.

Unpaid carers are still the mainstay of support for people with dementia in the UK. Research spanning several decades, perhaps even half a century, describes the nature of their day to day lives, the financial costs to their pockets, their personal costs, such as distress, physical and psychological burden. 

There has been research that has developed many tools and scales developed to measure much of this for professionals to use when assessing a family’s needs, but – yes there is a but.

There is still a lack of consistency in what support and services carers of people with dementia can even hope for, let alone expect. Services for families affected by dementia and their commissioning is still very much a post-code lottery, or perhaps more so, dependent upon individuals within any locality that really do want to improve care for this growing group of people.

Roy Lilley, in his recent column for NHS Managers (https://ihm.org.uk/nhsmanagers-net/), outlined the issues very well but there are several points I would like to add.

Now many of you might not read further given that I work for Dementia UK and promote Admiral Nursing as a solution to commissioner’s problems; you might say, ‘well she would say that wouldn’t she’.  But hear me out.

Admiral Nursing is the only specialist nursing service that specifically focuses on supporting such carers, but it is criticised for the lack of sound evidence of its effectiveness, cost benefits, and relationships to other health and social care services is limited.

However, what do we regard as sound evidence?  As a model of specialist nursing it has no more and no less evidence for its effectiveness than specialist nursing models for other conditions, such as, multiple sclerosis (MS), Parkinson’s disease, motor neurone disease.

However, in dementia care there is a belief that what families affected by dementia need is a dementia friend or a dementia buddy to signpost them to services and supports available. 

If you were diagnosed with MS would you want an MS friend to help you to adjust to your diagnosis, help you navigate through the mine field of social and health care, advise you on symptoms and their management, support your families through tough times? Probably not.

Similarly if diagnosed with cancer, would you want a cancer friend or would you want a Macmillan Nurse?

You would want the most skilled and effective support available – I would.  So why should we expect that families affected by dementia would want any less – they often have to settle for what there is.

We have seen a growth in a variety of roles: dementia friends, dementia navigators, dementia buddies but there is also scant evidence for the benefits of these roles too.

Dementia UK rigorously evaluate all new and existing Admiral Nursing services and have generated valuable evidence and data that suggests positive outcomes and impact of the model (see Dementia UK website: https://www.dementiauk.org/).

Admiral Nurses, where commissioned, are success in working with the most complex cases. They work predominantly with older carers and vulnerable families who care for the person with dementia; these carers are often heavily involved in caring activity, fail often to recognise their own physical and psychological needs and who may be at risk.

Roy states that Admiral Nursing does not go ‘deep enough’ but if commissioned appropriately it does through the process of case management of families affected by dementia.  And that is the rub – IF commissioned appropriately.  Unfortunately health and social care commissioning is far from integrated these days meaning that the trajectory of conditions such as dementia are becoming more fragmented than ever before.  Effective case management requires that the service is commissioned from the outset – diagnosis – and means the Admiral Nurse can work with a family throughout the course of the disease and then after death, in supporting family carers to ‘pick up their lives again’.

Roy made reference to the midwifery approach as an analogy for a process that may work for dementia yet then goes on to say that we should not medicalise dementia.

Dementia is currently ‘homeless’ – no longer aligned with mental health – quite rightly – but does not fit squarely in neurology (albeit its cause being brain diseases!), not fully a health or social care issue (moving in and out of each as the human condition often does); so where does that leave it when viewed from the skewed lens of the commissioner?

Admiral Nursing case management navigates families through services dependent upon their collective needs. Admiral Nurses are seen to be too expensive in dementia care but indeed our cost per unit probably equates to a midwife!

Society values children, so worthwhile the investment of a skilled nurse – why do we not equally value older people? Admiral Nursing can go as ‘deep’ as any commissioner(s) chooses – deep enough to really make a difference.

Following the ‘Cumulative Caring Crises’ that I posted about recently we have now accepted a respite care bed for my dad at the lovely residential home near me. My sister travelled over from France especially to bring dad up to Nottingham following his hospital appointment to check the progress of his bladder cancer. We are not mentioning the ‘L’ (Long-Term) word – just giving him time to settle and benefit from the attention, help and kindness of the staff.

It is hard and sad to see him alternating between being unsure and asking about going home, and being settled and enjoying a meal out with us and a walk by the canal. The home is busy and colourful – something that dad is not used to but that results from their caring, hands-on approach. My sister described it as ‘like Tracy Beaker’s orphanage – all bright colours and busyness’!

I feel too emotional to report in depth, but wanted to share the image below. The home has ‘Memory Boxes’ outside each bedroom where residents can display photos and objects that remind them of people that are important to them, or show a little about their tastes, hobbies and life. It is wonderful to walk along the corridor of bedrooms past model sports cars, or Forest shirts and football paraphernalia, or faded sepia photos of childhood days with mum or dad.

So I got out my felt-tips and produced a ‘Best Dad’ image with a steam train and mounted a photo of dad with his three daughters below. I hope it helps him find his room and remember that we love him, although I think he will respond more to the idea of steam and a good chug-chug sound!

For many years now I have been caught up in a cycle of stress and meltdowns trying to juggle life and work and my dad’s needs. This has been aggravated by the fact that my dad lives 200 miles away, and you will be familiar by now with my rants about the woes of long-distance caring. I spent several fruitless years trying to get support from the social care services where my dad lives. When I was close to a breakdown I asked his social worker for input and help with crisis planning, only to be told that I should pull out and ‘let your dad fail’ – only then would they be able to give some input. I wrote to ask for a Carer’s Assessment and was refused.

Over the following two years I took this battle on personally, creating a certain level of worry for my family and friends along the way. I asked for support from my GP with little success. I changed GP, again registering as a carer, and asked for help in appealing the refusal of the Carer’s Assessment, only to be told I should ‘park’ my expectations. But I’m a stubborn person when I believe in something, and I was feeling desperate and alone. I saw a different GP in the practice and now have some good support.

Then, at this very difficult time, a special man flitted in and then out of my life. I did not know whether the ‘out’ was permanent, and began to think about the reasons things fell apart – and the way that I tend to spend so much energy thinking about how other people are feeling that I don’t fully engage with, or acknowledge, my own needs. My special man would immediately recognize what I’m trying to put down in words – he had an uncanny ability to really ‘see’ me. It was something that brought us close, but that could also be a problem. Sometimes he wanted to get through that veneer – past the concerned/stressed/taking-on-other-people’s-problems me, to the ‘real’ (and more relaxed) person underneath.

This thinking spree proved to be timely. My helpful GP had written to social services in dad’s area asking them to reconsider giving me a Carer’s Assessment, and a few weeks later a big questionnaire plopped through my letterbox. I had hoped that the assessment might entail meeting with, or speaking to, an actual human being, so I telephoned the Carers’ Caseworker who had been assigned to me but was told that I needed to complete the paperwork before any face-to-face options could be considered – so I hunkered down with a supply of biros and a big mug of tea.

The Carer’s Assessment, like most things to do with carers, was not designed for those living long-distance. The questions were all about how your daily role of caring might prevent you doing certain things, and asked what a ‘typical’ day would look like. I have no typical day. If I’m at home it’s one thing – leading my own life but with time spent on phone calls, paperwork, finances, organization and crisis management for dad – and if I’m at dad’s it’s 24/7 supporting dad with no ability to lead my own life or to go to work at all.

But a magical thing happened as I began to fill in the details – I started to realize that this was all about me and not dad. I began to see that the ‘taking-on-other-people’s-problems’ me actually needed to start doing a bit less rather than a bit more, and that dad, too, stood to gain if I could find the more relaxed me underneath.

Dad is clear about what he wants. He wants to stay at home, independently, for as long as possible. We – his family – want to support him to do this. However it comes at a cost, and increasingly there are risks and issues of safety to consider as his Alzheimer’s progresses and his eyesight deteriorates further. But what I see more clearly now is that one of the biggest barriers for dad is me being realistic about what I can do. I know I need to give care lovingly if I am to do it at all – and moving from paid employment to self-employment has facilitated this – but I am still the person who takes other people’s problems too much to heart.

I have decided to try to regain a bit more of ‘me’ – to actually visit dad less often, but give him more quality time and attention; to work with my sisters to simplify his affairs; to make space again for spiritual things and not setting an alarm at the weekend. I hope to meet my Carer’s Caseworker face-to-face, but I am going to try to be my own support, too – to take responsibility for managing myself as well as dad.

© Anne de Gruchy

Whilst on my quest for seeking nursing homes which would offer both respite care, and an acceptable standard of care, I visited a place which I will call the Lawns, though it is nothing like that.

The Lawns was housed in a large dwelling of a previous era, a splendid architectural example of faded grandeur. Once inside, I felt overwhelmingly sad. The majestic oak doors, the high skirtings, the dados, mouldings and period fireplaces, were covered in generations of gloss paint, which was chipped, peeling and flaking.

The very friendly manager, wife of the owner, showed me into her office, and then proceeded to shift piles of paper work from a chair, so that I could sit down, The floor seemed to be the main filing cabinet. There was no room for my knees under the desk at which my chair was placed , as the knee hole was filled with nappies (clean), old shoes, a broken umbrella, and yet more files and papers.

I could only stare. It was truly chaotic, and I wondered how on earth she ever managed to locate any records or information. She didn't need to. After we had talked for a few minutes she exclaimed, Oh! You must be Sally, the lady who rang me 3 weeks ago. Oh!  I am so glad you have been able to come.

When she showed me round, I could hardly hide my horror, or suppress my giggles. It was Hitchcock Horror curtains versus nightmare inspired carpets, with Aztec styled duvet covers to boot. The plastic flowers which adorned every windowsill or other available surface were so garish that you had to shield your eyes. They were in colours which God had never known  about when he created the universe.

I went home, regretting a wasted afternoon, but knowing at least that I could tick it off my list.

The light bulb moment came hours later. I told myself to forget the paint, forget the chaos, forget the flowers, and to ask myself “what was your overriding feeling, Sally, when you were in there?”

Well, welcome, warmth, kindness, an ethos of caring, of treating the residents like people.............all good things, really.

Thank goodness I came to my senses, and saw through the shabbiness and tacky décor. My gut feeling was right. My husband stayed there for a week, Neither he, or I, or friends who visited him, could have been happier with the way he was loved, cherished and looked after. It just goes to show! Try to ignore the cover. Look (and feel) deeper.

Have you noticed the recent trend for politicians to sing the praises of carers, to acknowledge the billions the save the economy, to recognise they they should have, must have, breaks, and that they need support?

This should be music to the ears of carers everywhere, but not this one, I'm afraid, because the praises and the promises show no sign of being translated into action. So they remain just words. Words come cheap. Words might win voters. But fine words butter no parsnips, Mr Prime Minister.

In my case, help and support are what I beg, or what I buy, but it is not always there to buy!

If the government really wants to help, why not start by looking at residential care? I am not talking about the CQC –I think the libel lawyers would be on me in a flash if I started on that subject!  No, I am suggesting that they examine the availability of respite care in Nursing Homes.

Now that practically all such homes are in the private sector, they are inevitably profit led, which can be very disadvantageous, obviously, to the service user.

A couple of years ago  I needed to go abroad to tie up some business, and so set about looking for respite care for my husband.  I found a nursing home not far from where we lived, which would make it easy for friends to visit him, and which was owned and run by a well known health insurance company, which I thought would mean good quality. It was more expensive than most, but I did not mind that if it was better than most. I arranged to visit, and was happy with what I was shown, note, shown. They could accommodate him on the required dates, as they would have one of their designated respite room available. I could not see any of these rooms, as they were all occupied at the time of my visit. I thought I had struck gold, and duly made the booking.

I had arranged to take Wriggly in the day before Ihad to travel, so that I could spend the full day with him, to help him settle in.

The room turned out to be a cupboard, with a window but no view. If I sat in the guest seat, there was no room for the bed table. By pushing the bed right up to the window wall and removing the visitor chair, space could be made for the hoist to be broughtin. He had to be hoisted out into the corridor, as they was not space for the hoist and the bed and the wheelchair all in the room together.

But that was fairly trivial. I cannot bear to think about the rest, let alone write about it. Suffice it to say that I went away with a broken heart.

I vowed that he would never, ever, go into care again, but of course that was stupid. When we moved house (another story) it was impossible to cope with the packing and the enormous upheaval of moving, with WB in the middle of the crates, and still give him the time and the care he needed and deserved, and respite care was again inevitable.

This time I was wiser, and did more research, although hampered by the fact that health care workers, who know which are the good homes and which are the bad ones,  are seemingly not allowed to give recommendations or warnings.

I discovered (disclaimer – this is only my own observation, and may not be accurate) that the only homes which have designated short care beds are those withnothing to lose, as their quality / reputation is such that they are seldom full anyway.

For example, I discovered that another home, not to far from us, was a decided cut above the rest. I enquired about availability, not revealing I was interested in short term only. The owner, to whom I spoke to over the phone, was charming. He told me that they were full at the moment, but that the situation obviously changed all the time (a nursing home euphemism for 'people die'). He promised to keep in touch with me, but invited me, in the meantime, to visit and have a look round. When I was able to do so, on a Sunday, neither he or his sister co owner were there, but I was shown around by the person in charge, who reported my visit the next day. I then received a rather frosty phone call, from the previous charmer, who was clearly put out because I had wasted his time, by not telling him that I was only looking for respite care. He did not mince his words, which were that even if a vacancy cropped up, they would not offer it to me. When I asked how he could justify this, he replied, in a haughty manner, ”We are the only 5 rated home in this county, and we can fill our beds without difficulty. In fact we have a waiting list. Most people are funded, so why would they want to go some where inferior, when they can come here, at not cost to themselves. We are always full. We do not need 'one-weekers'.”

In an equally frosty manner, I said “So it is all about what you need then, not about what we the public, the carer's need?” I also said that I thought it should be obligatory, under law, for homes to accommodate short stay patients, to which he replied “We are a private company. No body tells us what to do!”

Sadly, he is right. No body does. Nobody can. But I still maintain that the government ought!  Or how else can the carers get the break which they are supposed to deserve?