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.
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.
Covid-19’s long tail
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.
Dementia UK and YoungDementia UK merge into one charity under Dementia UK name
On 1 November 2020, Dementia UK and YoungDementia UK merged and have become one charity.
For a number of years the two charities have collaborated, and after much consideration by the Boards of Trustees have decided to join together.
The merger will create a much stronger, more influential organisation in the area of young onset dementia. The combination of the two charities is especially important at a time when we are seeing the devastating and disproportionate impact of Covid-19 on people affected by dementia. Our beneficiaries and supporters are at the heart of everything we do and by joining forces, we will give them a stronger voice. Together we are committed to making a greater difference to people living with young onset dementia and their families.
Our aims from the merger are to:
• Grow and increase the impact of the Young Dementia Network to influence positive change across the UK
• Develop further the specialist support available for people affected by young onset dementia including digital support
• Support more people affected by young onset dementia in the UK
We will continue to operate under the name Dementia UK, to provide a stronger, unified, more influential voice for people living with and affected by young onset dementia – that is, anyone diagnosed with dementia under the age of 65, and their families.
Dr Hilda Hayo, CEO of Dementia UK and Chief Admiral Nurse, said:
“Dementia UK and YoungDementia UK have worked together successfully for years and this is an excellent development, and natural progression, for both charities. Now, more than ever, families impacted by dementia need empathetic, specialist support, and the coming together of these two charities will greatly expand our knowledge, expertise and capability for supporting families facing young onset dementia.”
Tess Gutteridge, Director of YoungDementia UK, said:
“YoungDementia UK is dedicated to supporting people diagnosed with dementia under the age of 65. We recognise the very different impact young onset dementia has on the person and their family. Joining forces with Dementia UK will help us amplify the voices of those dealing with this difficult condition, and reach even more people with specialist advice and support. Together we are committed to making a greater difference to people living with young onset dementia, and their families.”
The service offering of both charities will continue unchanged for the time being, with the view to enhancing these services in the future. The Young Dementia Network and the Young Dementia Oxfordshire support offering will continue under their existing names.