Vascular dementia – the long road to diagnosis
For a condition without a cure, receiving treatment and support to help slow down progression can be life-changing. But for vascular dementia, it can take years to receive a diagnosis and access care.
1 October 2018, by Siobhan Chan
What can you do in four and a half years? It’s enough time to complete a PhD, vote for a new government or see in another leap year.
But if you’re aged under 65, it can take this long on average to receive a diagnosis of dementia from the first onset of symptoms, according to a Dutch study1.Even in older patients, where dementia is more readily suspected, it takes an average of 2.8 years to be diagnosed.1
In vascular dementia, the disease gradually progresses as the underlying circulatory condition worsens, so a diagnosis is crucial as it means patients can access treatment for their condition. This can help to slow down disease progression.
In fact, failing to obtain a timely diagnosis can lead to a poorer prognosis, according to Dr Hilda Hayo, Chief Admiral Nurse and CEO of Dementia UK.
“People need a correct diagnosis so they can plan their lives and make decisions about their future,” she says.
Vascular dementia is the second most common type after Alzheimer’s – an estimated 150,000 people are living with the condition in the UK.2 Caused by blood vessels in the brain becoming narrowed over time, the typical symptoms can include memory loss, difficulty thinking, changes in personality or behaviour and problem-solving difficulties (see What is vascular dementia?). There is no cure, but treatments can help to slow progression. Lifestyle changes and support can also help patients to manage their condition.
Around three in ten cases of dementia are thought to be undiagnosed in the UK, estimates suggest.
There are many reasons why patients don’t receive a timely diagnosis. But now, programmes around the country are working to find solutions.
The wait for a diagnosis of vascular dementia begins when symptoms first appear. These can be cognitive symptoms, language or vision problems, and behaviour changes.
“People don’t tend to appear at the GP the first time it happens,” says Dr Hayo. “They give themselves some leeway – thinking that maybe it’s work pressures, stress, or relationship problems.
“Or it’s common to mistake a transient ischaemic attack (TIA) [which can lead to vascular dementia] for a migraine or severe headache – sometimes stating, ‘I woke up and my speech was slurred, but it got better over time’. People can wrongly attribute their problems to another condition.”
BMJ Best Practice defines vascular dementia as:
“Vascular dementia is a chronic progressive disease of the brain bringing about cognitive impairment. The executive functions of the brain such as planning are more prominently affected than memory. Motor and mood changes are often seen early.
The underlying damage occurs to both grey matter and white matter from predominantly vascular causes: that is, infarction, ischaemia, haemorrhage, and small-vessel changes.
Alzheimer's disease (AD) can also be a comorbidity, and a mixed dementia diagnosis is becoming more common.”
Dr Clare Taylor, a GP in Birmingham and Academic Clinical Lecturer for the National Institute for Health Research, agrees: “Dementia can be hard to spot. People often feel it’s just a little bit of forgetfulness or a normal part of getting older. It’s often the family that notice a change.”
Dr Hayo says that some patients may not realise there is treatment and support available. “They think there’s no cure, no treatment – no hope,” she says. “There’s a bit of fear, denial, and in some cases a lack of insight.”
Yet it’s vital that patients are aware of the symptoms of vascular dementia, Dr Taylor believes: “Dementia isn’t a normal part of ageing and it’s important to raise awareness of the signs.”
The Dementia Care Pathway, supported by NHS England, outlines the full pathway and associated benchmarks to support improvements in the delivery and quality of care and support. Reproduced with permission from the Royal College of Psychiatrists
Ruling out other conditions
Once patients present to their GP, their clinician must rule out any other conditions, such as vitamin B12 or B1 deficiency, anaemia or depression.
“You don’t want to start treatment for dementia when the real cause for the neurological presentation is something that is easily reversed,” says Dr Hayo.
But short appointment lengths make it difficult for GPs to get the full picture about a patient’s health – especially if the patient has been sent by their family. “GPs are only as good as information they’re given,” says Dr Hayo.
Some people with vascular dementia experience symptoms before 65, and these can be harder to pick up.
By nature, GPs tend to look for the most common condition based on a patient’s age, she explains. “That’s why it takes twice as long for under 65s to get a diagnosis – it’s kind of ruled out and another diagnosis is given – depression, anxiety, stress, relationship disturbance. [For people] over 75, it can be more expected due to increasing age.”
GPs must also assess the level of a patient’s cognitive impairment, for example by using the six-item cognitive impairment test (6CiT). Although tests such as this can have their limitations3, they give an indication of a patient’s memory and cognitive function.4
If the patient’s cognitive test suggests they need to be assessed further, GPs can then refer patients for diagnostic scans, such as CT or MRI scan of the head.
Testing for vascular dementia
However, timely access to these scans “depends where you live in the country,” according to Dr Hayo.
This corresponds with Dr Taylor’s experience. “[The wait for an MRI] isn’t too bad at the moment where I work, but I have known long waits in the past,” she says.
“Where I work, the referral form asks us to consider doing a head CT and we can order this directly, but that’s not the case for GPs everywhere,” she says.
Dr Hayo says that CT scans are ‘the cheapest option’ but not the most useful for diagnosing dementia. MRI scans are more appropriate because they can pick up subtle changes in the brain.
“Many people can’t access MRI – in some areas there is a four-month wait,” she says. “And the scan reading ability of the person who reports on the scan can vary as well as not everyone is skilled in identifying the early changes of dementia.”
Patients are usually then referred to a memory assessment clinic if they require specialist assessment. But this is another area where waiting times can slow down diagnosis.
Access to memory clinics
In England, people should be seen in their local memory clinic within six weeks of referral, but some clinics are exceeding this. The last publicly available audit in 20155 found that while the average waiting time was 5.4 weeks, 48 out of 182 memory services (26.4%) in England exceeded the six-week wait, and the longest recorded wait was 32 weeks.
“A county might have limited memory assessment services and so can soon generate long waiting lists,” says Dr Hayo.
Wayne Eaton first experienced symptoms of dementia in 2008-9 when he was 53 years old, like using the wrong words and forgetting people’s names.
At first, his doctors put his cognitive decline down to stress caused by his divorce and recent bereavements.
But it wasn’t until 2014 that in-depth investigations were carried out and a diagnosis of mixed dementia – vascular dementia and Alzheimer’s – was given.
For more on Wayne’s story, read the article in the BHF’s patient magazine, Heart Matters.
Strong demand also lengthens waiting lists. In addition, only a fraction of young-onset referrals leads to a diagnosis of dementia – this can be as low 12% in West London, 19% in Cornwall6 and 27% in North Wales, according to the Royal College of Psychiatrists. “False referrals clog up the system, as you spend two or three hours carrying out tests and scans on someone who doesn’t need them,” Dr Hayo says.
To support GPs in referring appropriately for young onset dementia, The Young Dementia Network has developed a decision-making support and prompting tool for GPs that is backed by the Royal College of General Practitioners (RCGP).
“Most GPs will only see one or two cases of young onset dementia through their career so they aren’t adequately equipped to recognise the early symptoms of young-onset dementia,” Dr Hayo says. “That’s something we hope the decision support tool can help with.”
Supporting patients post-diagnosis
Once patients have received a formal diagnosis, they and their GPs can often feel there’s a lack of support available: a potential reason people don’t seek a diagnosis . “In some places there are no extra services or support post-diagnosis for younger people with dementia, and limited services and support for older people with dementia,” Dr Hayo says.
At the point of diagnosis, NICE recommends that patients should be given extra support and advice. For example, a dementia advisor should provide information on available local support.
But this can be a postcode lottery, particularly for young-onset dementia, according to Dr Hayo: “Lots of counties don’t have age-related services – each area has a different level of funding and sometimes there is no money for post-diagnostic support for younger people with dementia.”
The Admiral Nurse Dementia Helpline at Dementia UK receives many calls from patients and their families who have received a diagnosis but are left with little to no support and are therefore ‘in crisis’, she says. “Post-diagnostic services for dementia are diminishing. The best thing would be for health and social care to have a joint budget which is ring-fenced for dementia post-diagnostic support.”
Where healthcare budgets are lacking, the voluntary sector can step in. A programme in Hertfordshire links together Dementia UK, Carers in Herts, Age UK and the Alzheimer’s Society with backing from Hertfordshire County Council to support people who have just received a diagnosis of dementia from a memory clinic, by providing access to specialist nurses and peer support groups.
Training to spot dementia
To improve dementia diagnosis rates and ensure referrals are appropriate in the UK, the RCGP is currently teaching GP trainees to better spot the signs of dementia.
“GPs have had more and more thrust on them over the years – they don’t have the specialist knowledge of dementia, so better support is needed,” says Dr Hayo.
New models of care are also introducing more help for patients and healthcare professionals.
NHS High Weald Lewes Havens Clinical Commissioning Group (CCG) and Buxted Medical Centre in East Sussex have joined up with the local council and several charities to deliver more joined-up care for dementia patients.
Their ‘golden ticket’ service gives patients a single point of contact for their care. They meet with a ‘dementia guide’ within two days of a diagnosis, and can access personalised advanced care planning. Early evaluations show that it is already reducing GP visits and emergency admissions to hospital.
Meanwhile, a scheme commissioned by NHS South Norfolk CCG links specialist dementia nurses (Admiral Nurses) with GP practices to give dementia patients direct support7. A similar scheme in Norfolk saved £440,000 over 10 months, reducing contact time with GPs by 60% and with nurses by 16%.
More help for GPs to diagnose and refer patients appropriately; better access to diagnostic scans; clear pathways for patients to access support. Together, these should help to reduce diagnosis delays and improve patient care.
Then, perhaps the wait for a diagnosis might not be so long.
The BHF is funding research that could help to answer the most pressing questions about vascular dementia.
Find out more
1 Van Vliet, D., De Vugt, M., Bakker, C., Pijnenburg, Y., Vernooij-Dassen, M., Koopmans, R., & Verhey, F. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43(2), 423-432. dx.doi.org/10.1017/S0033291712001122
2 NICE Clinical Knowledge Summaries, Dementia (2017) https://cks.nice.org.uk/dementia#!topicsummary
3. Seitz DP, Chan CCH, Newton HT, Gill SS, Herrmann N, Smailagic N, Nikolaou V, Fage BA. Mini-Cog for the diagnosis of Alzheimer’s disease dementia and other dementias within a primary care setting. Cochrane Database of Systematic Reviews 2018, Issue 2. Art. No.: CD011415. dx.doi.org/10.1002/14651858.CD011415.pub2
4. Abdel-Aziz K, Larner AJ. (2015) Six-item cognitive impairment test (6CIT): pragmatic diagnostic accuracy study for dementia and MCI.Int Psychogeriatr. 2015 Jun;27(6):991-7. dx.doi.org/10.1017/S1041610214002932.
5. Second English National Memory Clinics Audit Report (2015)Royal College of Psychiatrists https://www.rcpsych.ac.uk/pdf/English%20National%20Memory%20Clinics%20Audit%20Report%202014.pdf
6. O'Kelly, A. , Richards, G. and Gorospe, M. F. (2015), An audit of younger patient referrals to a memory clinic. Prog. Neurol. Psychiatry, 19: 21-25. dx.doi.org/10.1002/pnp.374
7. Norfolk Admiral Nurse Pilot Evaluation Report (2014) Dementia Partnerships. https://dementiapartnerships.com/wp-content/uploads/sites/2/IDN412AdmiralNursePilotEvalReport.pdf