Doubling down on dementia

People with dementia, as well as their carers, have been hit by the closure of care and support services during the pandemic, and pharmacy staff have a key role to play in supporting them as restrictions ease

The latest figures released by the Office for National Statistics (ONS) show that as the Covid-19 crisis appears to ease, another remains as urgent as ever. Once again, dementia became the leading cause of death in England in March, and the second leading cause in April 2021. Dementia is also the second leading cause of death in Wales, according to most recent ONS data, as well as in Scotland – via the National Records of Scotland. In Northern Ireland, it is the fifth most common cause of death, according to the Northern Ireland Statistics and Research Agency (NISRA).

Nearly a million people are estimated to be living with dementia in the UK, according to dementia research charity Alzheimer’s Research UK – and these numbers are on the rise.

The charity says there are a few reasons why cases appear to be increasing, including a greater awareness and understanding of dementia meaning more people being diagnosed. And as age is the biggest risk factor for dementia, and people are living longer, so the number of people developing dementia goes up.

There are currently no life-changing treatments for the condition, although there is support available. However, rather worryingly, the pandemic has meant many people have not been getting the timely support and management advice they need.

“With all the restrictions, GP surgeries and memory services have been unable to provide diagnoses for families,” says Paulette Winchester-Joseph, deputy clinical lead at the Admiral Nurse Dementia Helpline run by Dementia UK. “This means we now have a quite significant backlog where families are not given a diagnosis to help them access support and plan for the future.” 

According to Susan Mitchell, head of policy at Alzheimer’s Research UK, the dementia diagnosis rate has dropped by 40,000 since March 2020, and referrals to memory clinics dropped from 2,509 in February 2020 to 1,461 in February 2021.

Pandemic impact 

As well as delays for people waiting for a diagnosis, there have also been reports that the Covid-19 pandemic has accelerated people’s dementia symptoms and death. This has been exacerbated by the closure of many support services, or lack of contact with loved ones for residents in care homes – where the Alzheimer’s Society says at least 70 per cent of people have dementia.

An investigation by the Alzheimer’s Society, Dementia UK, John’s Campaign and Together in Dementia Everyday (Tide), showed only 13 per cent of people surveyed had been able to go inside their loved one’s care home since the pandemic began, with almost a quarter (24 per cent) not able to see their loved ones at all for over six months. Around a third (31 per cent) reported a more rapid increase in loved ones’ difficulty speaking and holding a conversation, while 32 per cent of those who lost a loved one with dementia during the pandemic thought that isolation or lack of social contact was a significant factor in that loss.

“We have seen high rates of mortality in people with dementia following a positive result of Covid-19,” says Paulette. Figures from the Alzheimer’s Society estimate 34,000 people with dementia have died from Covid-19 since the pandemic hit the UK in March 2020.

Pressure on carers

And, of course, the pandemic has not just hit those in care homes. The Alzheimer’s Society says 470,000 people with dementia live in the community, many of whom are reliant on unpaid family carers for support.

These family carers are vital to the people for whom they care, knowing how to get their loved ones to eat, drink, take medicine and when something is wrong. An overwhelming 92 per cent of respondents in the Alzheimer’s Society’s study who care for someone with dementia said the pandemic had accelerated their loved one’s dementia symptoms, and 28 per cent of family carers said they’d seen an “unmanageable decline” in their loved ones’ health.

In a supporting survey of unpaid dementia carers by the Alzheimer’s Society, almost half (48 per cent) said that they had performed tasks they felt unqualified to carry out because of a lack of support and as a result they reported 72 per cent of people with dementia having medical issues at home. 

Understandably, this has affected carers themselves – some 73 per cent of carers reported that the last year has negatively impacted their own mental and physical health.

“Reduced contact time with health and social care professionals can also make it challenging for carers to work through their own difficult feelings, including those brought on by anxiety,depression and even anticipatory grief, which is where a family member experiences loss before someone has died due to relationship changes,” says Paulette.

Charities’ call for action

The UK’s dementia research charities say all these figures underline the urgent need for more funding into dementia research, and have called on the Government to implement a national strategy and honour its manifesto pledge of doubling dementia research funding.

With the Government due to publish its dementia strategy for 2022 to 2025 in the autumn, Susan says: “We hope it will include substantial reforms to address the drops in the diagnosis rate and referrals to memory assessment services. In addition to supporting dementia services and diagnostics, the Government and NHS England must also take the opportunity to prepare for research developments on the horizon. The Government pledged to double funding for dementia research in its 2019 manifesto and we must see them honour this promise to help deliver breakthroughs that can change lives.”

In addition, Alzheimer’s Society, Dementia UK, John’s Campaign and Tide are jointly calling for universal social care as a legacy of Covid-19, which they say should be “free at point of use, like the NHS, like education – and providing quality care for every person with dementia and in their families who needs it”.

Support from pharmacy

Until these important developments materialise, there is plenty that can be done in the community to support people with dementia and their carers. Located within the heart of local communities, pharmacies are well placed to assist when it comes to spotting the early signs of dementia and signposting people to relevant services for support.

Graham Phillips is superintendent pharmacist and owner of iHeart Pharmacy Group, where all staff are trained as healthy living champions and Dementia Friends. Graham agrees that early detection and referral for dementia is key and that pharmacy teams therefore have a vital role to play. “With a little extra training, pharmacy teams are perfectly placed to spot early signs of dementia,” he says. “We see people on a very frequent basis and develop strong and trusted relationships so often spot warning signs such as behavioural changes or confusion.”

This is especially true for people who have long-term conditions for which they are taking regular medication, giving pharmacy staff another role to play in advising patients and their carers to speak to pharmacy professionals about medicines optimisation.

“Dementia patients may need to take several different medicines and remembering to take these may become challenging for them,” says LloydsPharmacy superintendent pharmacist Victoria Steele. “Pharmacies can help by providing dosette boxes, offering home delivery services and proactively contacting patients about their repeat prescriptions.”

Graham says although it is still “a taboo subject”, pharmacies can also offer a lot of support around end of life care. “Most people at the end of life are taking – or more likely failing to take – a complex and often conflicting cocktail of prescribed medicines,” he explains. “While many patients at the end of life do have their medicines reviewed regularly either by their GP, their consultant or a hospital pharmacist, there will inevitably be those who fall between the cracks, and community pharmacy staff can help spot these patients – possibly by interactions in the pharmacy with their carers – and play a pivotal coordinating role in connecting them with the pharmacist for review.”

With carers also under significant time pressures, Paulette says clearly written and simplified instructions for administration of medication can be beneficial for them, as well as the people they are caring for. “This can include text in a larger font outlining how to take the medication and how often as well as whether medication can be crushed before taking it,” she says. “Some people with dementia have swallowing difficulties, so offering alternative methods of administration, such as in liquid form or topical alternatives, can be helpful.”

As well as getting to know the patient and keeping an eye out for them, Victoria says it can be just as important for the pharmacy team to get to know their carer. “Because of the degenerative nature of dementia, it’s important this person also feels supported by the pharmacy and knows they can come to the team for help and advice when needed.”

Pharmacy staff might be the only contact that some people with dementia – and their carers – are having with another person at the moment, so it’s ever more vital for teams to make every contact count.

Lack of sleep increases dementia risk

People who sleep six hours or less each night in their 50s and 60s appear to be around 30 per cent more likely to develop dementia in later life, compared to those with normal sleep duration, according to a new study by researchers at UCL and the French National Institute of Health and Medical Research INSERM.

Lead author Dr Séverine Sabia says: “Sleep problems are known to occur in people with dementia, and by using a very long follow-up period we have found that short duration sleep in midlife is associated with dementia risk in late life.” 

While the research did not confirm that lack of sleep actually increases the risk of dementia, Dr Sabia adds: “There are plenty of reasons why a good night’s sleep might be good for brain health [and] these findings confirm the importance of sleep hygiene for health.”

Further information

• Alzheimer’s Society Dementia Connect support line: 0333 150 3456
• For practical and emotional support, carers can access Dementia UK’s Admiral Nurse Dementia Helpline on: 0800 888 6678 or helpline@dementiauk.org.