Real stories

'Nobody should face dementia alone' – why we need to invest in support after a diagnosis

We all have the right to live a fulfilling life, and people affected by dementia have the right to a timely diagnosis, allowing for compassionate, personalised care. This is why I joined the NHS, to live my values, and allow others the support they deserve.  

In my role as Consultant Occupational Therapist, I work with the memory and community mental health services in my area. The care we provide is received after diagnosis from a specialist, who gives immediate support. But with a complex condition such as dementia, support must be ongoing and wide-ranging. 

From medication reviews to accessing local support groups, and services such as occupational therapy, it is essential that care is tailored to meet every individual's needs. However, with the system underfunded and overstretched, making sure that people can access interventions and support after a diagnosis can be seen as an optional extra. When, in reality, this support can enable people to live well with their condition and is why many seek a diagnosis. 

After a diagnosis, three out of five people (61%) told us that they did not feel supported by the health and care system to cope with their diagnosis and manage their condition. 

[Source: Left to Cope Alone: The unmet support needs after dementia diagnosis]

Accessing the system to support my loved ones, and working in it to provide support, I have felt the squeeze of the pandemic on the NHS. But crucially for those accessing a diagnosis, the increased demand has created a system which is competing for resources internally.  

With an estimated 30,000 more people living in the dark about their diagnosis due to the pandemic, we are urged to increase diagnosis rates. But perversely, this means that my colleagues and I are pulled away from providing vital care after a diagnosis. 

Research shows that just 38% of people with dementia say they are receiving dementia services. 

We want to provide a system which is joined-up. This means different services talking to each other, so support is easier to access. But a lack of guidance after diagnosis often leads to a postcode lottery of access to effective care and support. 

We are between a rock and a hard place. We know our services can allow people to live independently for much longer and find care which suits their needs. But the complexity of the system and increased wait times often cause the needs of people to go unmet. This increases the likelihood of crises, such as hospitalisation and quickening deterioration. 

Nobody should face dementia alone 

In a fragmented system, seeking support can be lonely for people living with dementia and their loved ones. But what can be gained can be life changing.  

I have seen the difference it makes when individuals and families receive care that is personalised to meet their needs. I have seen it alter the progression of symptoms and provide a supportive hand to loved ones.

‘Ultimately, the right support can change a pessimistic journey to one of optimism.’

We live at a time of hope for everyone affected by dementia. There have been advances in cognitive rehabilitation, and new treatments are becoming available. But more must be done to create a system in which professionals, like myself, are not limited by time and money to provide this support.  

With the introduction of Integrated Care Systems, and a new National Dementia Strategy, there is now a real opportunity to improve support after diagnosis. For myself, my colleagues, and people affected by dementia, I’d like to see a system which is valued and accountable. 

We need appropriate governance to hold all geographic areas to the same standard. We need the NHS to review capacity, so we can ensure we have the staff to meet demand and the time to give support after a diagnosis. And we need to create a joined-up system, providing clear networks of support, which talk to one another. 

This change is possible, and thanks to campaigners who have contributed to Alzheimer's Society's new report, we now have the evidence to back it up. 

To learn more about our full list of recommendations, please read our report ‘Left to Cope Alone: The unmet support needs after a dementia diagnosis’.

With the help of Liz, and so many others, we will challenge the system to provide regular and timely care after a diagnosis, allowing more people to live a fulfilling life.