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

As a Consultant Occupational Therapist in the NHS, Liz knows the problems that people can face accessing dementia support. She explains why the Government must focus on the support after a dementia diagnosis, not just receiving one.

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. 

Liz and Tarie with Alzheimer's Society CEO Kate Lee

Liz (centre) with Alzheimer's Society CEO Kate Lee (left) and NHS clinician Tarie (right)

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. 

Our dementia advisers are here for you.

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. 

Liz speaking at a parliamentary event

Liz and Tarie share their experiences in parliament during Dementia Action Week

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. 

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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. 

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Yes all in all its so hard not to get totally depressed.

Sylvia, If you ever need someone to talk to, please know that our Dementia Advisers are here for you.

You can call our support line on 0333 150 3456 if you have any questions or if you're seeking practical advice or emotional support. (Opening hours and further details about support is available at https://www.alzheimers.org.uk/dementia-connect-support-line)

You might also benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia share their experiences, offer advice and give support to others going through similar situations. You can browse topics within the community, or you can join conversations by registering for free: https://forum.alzheimers.org.uk

Please do call the support line on 0333 150 3456 if you need us, Sylvia.

Alzheimer's Society

As a dementia sufferers l life alone there is not adDay goes by that I forgot to do some things jimmy

In Shropshire we have begun PALZ UK with web site palzuk.org.uk. Professionals with Alzheimer’s or dementia from other diseases.
Those diagnosed with dementia from whatever cause, from challenging work backgrounds or who have led interesting lives, need mental and social stimulation in a work type environment.
We provide stimulating talks and an opportunity to forge friendships with those on the same journey.
One of the participants commented’ PALZ recognises that, just because you have dementia , you haven’t lost your brain’
We need people in the UK to set up groups and can provide lots of support to do so. Please look at the web site, especially the feedback section, and contact us! These groups will mean a definite stimulating , supportive structure after a diagnosis.

I totally agree; nothing happens after initial diagnosis, nothing to understand the progression, no review, just a health check. I don’t see anything to help in future. It is no good just signposting; that is no help.

I totally agree, no regular review of medication, no follow up after the initial diagnosis, sign posting does not help everyone .

If more information is so effective why do the neurologist not provide it.

The valid concerns highlighted emphasize the need for asap diagnosis, as important as it is, my experience of still waiting for a clear decision only after expressing my concerns about my unresolved pre dementia diagnosis symptom profile, which only then resulted in the more sensitive brain scan needed to prove those symptoms can be detected at an early enough time to make optimum minimisation a realistic objective.
The blog says: She explains why the Government must focus on the support after a dementia diagnosis, not just receiving one.. as the ongoing nun study continues to prove whole community support is most effective when everyone gets involved, if the government was to make the prevention of the pre-dementia symptom profile the priority it would no doubt slow the increase in symptom maturity and even the predicted increase in Dementia. prevention or cure?

I try to support the Alzheimers Society. I have seen nobody at all since my husbands diagnosis 2 years ago. Thank god I am coping OK at the moment but I do miss him. I mean as he was. In so many ways although he is marvellous compared to what I read on monthly news from Alzheimers Society emails.

Sylvia I totally agree with you. I miss my husband so much as he was. It is very difficult doing everything as well as caring for my husband. I am coping ok at the moment and my husband is placid and seems to have accepted his diagnosis at last.

Thank you for the care you provide to people after a Diagnosis of Alzheimer's Disease or other type of Dementia. In addition to your work please advertise Continuing Healthcare (CHC)available direct from NHS which is not widely advertised. For people with "complex" or "unpredictable" health conditions should qualify for CHC which isn't means tested. Finance is available to cover all the costs of their care ideally in their homes , but if necessary in a Nursing Home.
Privately funded care costs can easily exceed £1000.00 a week. However if bed blocking in a Hospital , because no care can be provided at home, then the costs to NHS could be £5000.00 a week or more!
It makes financial sense for NHS to be more generous with the care arrangements they provide to the public if they have a "Primary" Care need like Alzheimer's Disease, or many other health needs where people are unable to look after themselves & their loved ones are unable to manage the care 24/7 on their own.
ICS's sounds like a good idea as the previous arrangement where funds were under the control of Clinical Commissioning Groups often refused to fund care due to limited financial resources , or deliberate rationing in my opinion. Either way obtaining CHC was a real struggle as I found for myself when nursing my Wife Pauline. Following her death I launched a website which has attracted huge interest over the years & is supported by several organisations like Alzheimer's Society. Details are at https://continuinghealthcare.wordpress.com/
Best wishes. Peter Garside

There is no care ,no support,no help .My doctor referred my husband for several things including Ocupational Therapy, falls,eight months ago,Ihave heard nothing.My husband has severe Lewy Body Dementia, and nobody cares ,it’s barbaric.

As a carer of my husband who has Alzheimer's dementia, I know at first hand how a lack of support can impact negatively on one's life. A lack of practical guidance at the start can lead to a depressing merry-go-round of unhelpful signposting that leads back to the primary care service-which is not interested in how carer and caree are coping. Things really do need to change.

Oh my god do I agree . This terrible illness has ripped my family apart. We have gone from being the closest family that have dealt with so much in life and this wicked illness has made us all crumble. My beautiful mum was diagnosed a few years ago ended up in care during covid is in a care home that is not caring for her properly . Just have no idea what else to do our social worker is useless no one is listening this whole situation is a living hell .

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