Dementia UK

The diagnostic backlog and restrictions to GP access feature as some of the top reasons for calling the Admiral Nurse Dementia Helpline.

Dementia UK has announced investment in dementia specialist Admiral Nurse posts to provide ongoing support to families in need of a diagnosis and following one, in addition to supporting primary care professionals, such as GPs, in their understanding around dementia.

When things get challenging or difficult for people with dementia and their families, Admiral Nurses work alongside them; giving compassionate one-to-one support, expert guidance and practical solutions which can be hard to find elsewhere. Admiral Nurses work in a range of care settings including out in the community – 22 Admiral Nurses are working in primary care settings already.

The areas that have so far been identified to support a potential of 19 roles are Somerset, Dorset, Northumberland, Cumbria, Leeds, London, Shropshire, Cambridgeshire, Buckinghamshire, Essex, Sussex, and Leicestershire; further roles are planned for other parts of the UK.

With £1 million being allocated for the roles overall, this is the biggest investment Dementia UK has made within primary care.

Pressures faced by GPs

The announcement follows Dementia UK’s Facing it Alone report, which highlights the pressures faced by GPs in providing dementia care and support. Even before the demands of the pandemic, 82% of GP respondents said that time and capacity pressures were an issue for them. Meanwhile 71% of carers in the report said that home visits from care and support staff had been cancelled, therefore putting further strain on GPs due to the increased need. It also comes at a time when many families are ringing up the charity’s Admiral Nurse Dementia Helpline in search of a diagnosis, or further support following over a year of lockdown.

Admiral Nurse experience in primary care

Mary–Jo Anson, Admiral Nurse at the West Devon service said: “My role within the West Devon Admiral Nurse service has meant that I have built up strong relationships with GPs and other healthcare professionals in primary care. GPs can often be the first point of contact for families when they have issues around memory loss and are concerned about dementia in themselves or a loved one.

“As an Admiral Nurse working with GPs, I know that some families can feel a sense of stigma and challenges around access to GP surgeries; this is when families need that extra layer of support through Admiral Nurse home visits, for instance. Following these home visits, time pressures on GPs can decrease and families feel more confident.”

The development of Admiral Nursing roles within primary care has featured long into the history of Dementia UK, bringing good quality dementia care closer to the people who need it. Mary-Jo works in the community team of Livewell, a provider of integrated health and social care services, with the majority of her referrals coming from GPs. One of the most common reasons for referral to the West Devon Admiral Nurse service is where family carers are facing significant distress due to behaviour changes in a family member with dementia.

A GP from the West Devon GP Practice says: “Since having an Admiral Nurse at the Practice dementia care has improved substantially. People have a point of contact to help deal with difficult situations, and begin to feel the unmanageable can be managed. The benefits do not stop there, I have noticed a change in my workload: fewer appointments and home visits for patients with dementia. I used to wait for that crisis call on a Friday afternoon from a patient with dementia, not any more!”

Importance of Admiral Nurses in primary care

Paul Edwards, Director of Clinical Services at Dementia UK said: “These new roles within primary care in the UK come at a time when people with dementia have never needed more support. From recent research, we know how stretched GPs are providing critical care to some of the most vulnerable people in society; we also know how families can be overwhelmed at the sheer amount of information they can be given at diagnosis, with limited time to talk these issues through.

“That’s why having more dementia specialist nurses working at the heart of primary care is essential, to distil that sheer wealth of information to families and to support GPs in their understanding of a condition as complex as it is life-limiting.”

The new Admiral Nurse roles based within primary care will be established over the next year. The role operating in Leicestershire will be focussed on improving access to primary care for diverse communities, who continue to under-access dementia care services due to lack of tailored support.

For further information on the pressures facing families and GPs, please see Dementia UK’s Facing it Alone research report and its Only Together vision paper for recommendations on better dementia care and support.

Neil’s story reminds us that despite these tough times, Admiral Nurses have supported families with dementia throughout, helping them to reflect on the past, live in the present and plan for the future.

Neil’s story

My dad, David, a retired teacher, keen traveller and a lifelong fan of all sports, but especially rugby, cricket and athletics, was diagnosed with Alzheimer’s in 2014.

It wasn’t really until 2018 that it began to impact on him to such a degree that he required support with everyday living. Then, during a hospital admission in 2019 for a suspected hernia he suffered a minor stroke, as well as delirium, leading to a steep decline in his health once he returned home.

Community coming together

Nevertheless, a community circle helped draw together support from friends, family and neighbours and continued to allow my parents to do the things that mattered to them and keep connected while living with dementia. While everyday life was challenging, he remained contented, often laughing with my mum when he forgot words or how to do various things, rather than becoming distressed.

Unfortunately, the Covid-19 pandemic and lockdown undid much of this and, as appears to have been the experience for many living with dementia, my dad’s health and wellbeing went into a further sharp decline, endangering my mum’s health and wellbeing as she struggled to support him without being able to draw on outside help. A particular risk was balance and falls, with my mum having to call in paramedics on several occasions just to help my dad get up, albeit without admitting him to hospital. He was also less and less willing to cooperate with us or with the paid carers we briefly brought in.

Then, one morning, while I was there and after we’d helped him have a shower, it appeared he was struggling to stand or walk unaided. We feared it may have been another stroke, so called 999. This time the paramedics felt he should be admitted, concerned as they were about his blood pressure. We could not go with him because of a local lockdown. We waved him goodbye in the back of an ambulance. After our previous experience of hospital, we were worried sick.

We were his advocates in hospital

When he’d been admitted to the same hospital 18 months earlier we had had to remind every single consultant who saw my dad that he had dementia, despite information in his medical notes. That time we had been able to be there, acting as best we could as his advocates. Once he was home, we didn’t like to imagine what might have happened had we not been.

Our fears confirmed

So when a few hours later an A&E doctor called my mum and said: ‘Your husband appears very alert, but when I ask him questions he appears confused and struggles to answer,’ alarm bells began to ring loudly. And sure enough, when my mum advised the doctor of my dad’s Alzheimer’s, our worst fears were confirmed when she indicated that she had been unaware.

A dementia specialist Admiral Nurse came into our lives

Luckily for us, we were told that the hospital had a dementia specialist nurse and, a couple of hours later, Admiral Nurse Kerry Lyons came into our lives.

It’s taken me a while to write this as I wanted to truly honour what Kerry meant to us. I could tell you how the very first thing she did was to find out who my dad was and what mattered to him, not what was wrong with him, and how she made this the framework for his care. I could write about all the practical help and advice Kerry provided in helping us to understand what was happening and what was going to happen when information from the hospital was sometimes inconsistent, alarming or in short supply. I could tell you about the support she gave in finding a care home place. I could tell you about the morning calls to let us know how my dad was when we couldn’t be there, the late-night messages of reassurance and advice or the cups of tea she brought my mum first thing in the morning when she’d stayed overnight to be by my dad’s bedside towards the end. I could tell you about the honest, sensitive counsel she gave us about whether continued treatment was in my dad’s best interests and I could tell you how, as the town we were in descended into a local lockdown, she helped ensure we could still be with my dad at the end of his life. And I could reflect on doing all of the above must require such diplomacy, tact and expertise to win and sustain the trust and respect of patients and their families and hospital colleagues at all levels.

Kerry became our advocate

I could tell you about all of those things, but I don’t think they would convey the most crucial thing Kerry brought, which was this: she made us all feel like someone cared about my dad and us, not only that my dad was being cared for.

Kerry’s empathy had shone through, and I sensed it must have come from personal experience, so I asked and sure enough it had. It’s not my story to tell, but what I do want to acknowledge is what it means to dedicate one’s life to righting a wrong for others that you no longer have the opportunity to fix for the people you love most. I will take that with me always, and dedicate myself to it too.

Kerry, you came into our lives when it mattered most. You helped my dad have the best possible end to his life and helped to give us the strength we needed to be there for him.

Paul Edwards, Director of Clinical Services at Dementia UK, reflects on the impact of the pandemic on dementia care. Whilst society will see some normality over the next few months, the long tail of Covid-19 will be felt strongly.

A year into the pandemic and we are just beginning to understand the impact of Covid-19 on people with dementia and their families. With tens of thousands of people with dementia having lost their lives, services shut overnight and the impact of social distancing, our individual and collective responses to dementia care have been put through their biggest tests yet. We have been left wanting in many areas and we need to seriously reflect as a society how we have got ourselves to this point.

Focus 1: Care Homes

Early on in the pandemic, we saw the impact of multiple discharges from the NHS into care homes. Rapid discharges without testing availability and asymptomatic transmission led to multiple infections in care homes for both residents and staff. We also know that infection control processes are less straightforward in care home environments. It is not uncommon, particularly during the winter, to see rapid discharges from hospitals to manage capacity, but the scale and speed of the discharges was truly unprecedented. We need to fully understand the relationship between NHS capacity and care home occupancy. Both are reliant on each other to function – yet it is often not an easy relationship, and in crisis, things such as discharge planning get overlooked. This needs to change, and it is crucial that we have health and social care working closely when transitions in and out of hospital occur.

Visiting has also been significantly impacted through the pandemic. There have been so many heart-breaking accounts about the impact of not being able to see the people we love. At Dementia UK, we have used our clinical understanding to bring care home providers, families and local public health together to design safe and effective plans to enable visiting to resume.

We know the impact that a lack of social contact can have and we also understand the impact that families have on providing essential care to their loved ones in a care home; we have tried to balance that with the need for good infection control measures and compassion. This is where policy should step in to build consensus and connection through planning. This has been a gap throughout the pandemic and whilst we are starting to see more understanding and compassion on behalf of policy makers, we have yet to see sensible safe visiting plans that support families to reconnect with those they love.

Focus 2: Diagnostic backlog

Getting a diagnosis of dementia has been patchy across the UK for a while; this issue has been one that various dementia strategies have tried to change with some success. Diagnosis rates have been hit hard by Covid-19 with services having to reduce their diagnostic assessments – with some closing altogether – and others providing remote diagnosis. This has led to thousands of families stuck in limbo; understanding that something is wrong but unable to get access to a diagnosis and post-diagnostic support. Getting a diagnosis has been one of the main reasons for calls to our Admiral Nurse Dementia Helpline. In these calls we hear the fear, uncertainty and the emotional toll this is placing on families. We do need to prioritise diagnosis as the country opens up, in anticipation of a backlog of anxiety and an increased demand for post-diagnostic services. Any plan to achieve this needs to be well-resourced, coordinated and integrated into a wide range of ongoing support services that families need to be able to care for those they love.

Focus 3: Handling trauma and grief

We have witnessed such a high level of mortality in dementia care. However, behind the data are human beings who are grieving. The scale of the grief is much bigger than can first be expected; many families have had their final goodbye to a loved one taken away from them due to visiting restrictions. This will require understanding and support on a scale that will challenge services. We need to ensure that we recognise just how traumatised and emotional families are, providing highly sensitive psychological support to help them work through their grief.

It isn’t just families though that will need ongoing help – our workforces need this too. As professionals we have faced increased demand, complexity and death at such a pace. We should therefore do everything we can to provide ongoing support and resources to help them cope with the trauma of these times.

Focus 4: The long tail

At Dementia UK, we describe lasting impact of Covid-19 as the ‘long tail’. It will be felt much longer in dementia care than for some other aspects of society; we need to understand and be ready to handle issues that linger. Covid-19 should challenge us to be better in our societal approach to dementia than we have been. Fault lines have been exposed that we have avoided for too long.

We owe it to people with dementia, their families and the workforce to radically overhaul the way we approach dementia care in the UK, so that in the future we can avoid being hardest hit- we know now the consequences, if we don’t rethink our approach.