Dementia currently affects around 850,000 people in the UK, and this figure is set to soar to one million by 2025 and two million by 2050. What’s more, a quarter of hospital beds are now occupied by people living with dementia who are over 65 years of age. Despite this, it seems that many people are still unaware of the facts behind the disease, and the conditions that contribute to it.
Dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem solving or language. These symptoms usually start small, but become more severe over time and have a huge impact on a person’s life, as well as their mood and behaviour.
Around 95 per cent of all cases of dementia are due to Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia.
It is thought that several factors can affect a person’s risk of developing dementia, including age, genetics, lifestyle choices and medical conditions. For example, we know that having type 2 diabetes, high blood pressure and high total cholesterol levels can increase a person’s chances of developing the disease. This means that reducing the risk of these conditions can reduce the risk of dementia.
Community pharmacy services and interventions such as type 2 diabetes screening, blood pressure and cholesterol checks, and smoking cessation services have an important role to play in helping people to stay as well as possible for as long as possible.
Although there is no cure for dementia, it is not an inevitable part of ageing. There are a host of ways in which people can ward off or delay its onset, or manage symptoms post-diagnosis and live well with the condition. Gillian Stone, dementia friend champion at Well, agrees. “Pharmacy teams can support people with dementia or caring for those with dementia to identify practical methods that help them remember to take their medication regularly,” she says. “Advice could include non-medical ways to help people with dementia live well, such as keeping physically and mentally active; socialising with friends and family, and maintaining a healthy, balanced diet.”
In the general population, a healthy lifestyle reduces the risk of all kinds of long-term conditions. But for people living with dementia, studies have shown that keeping as healthy as possible for as long as possible – including through diet and exercise – is a beneficial way of managing the condition.
“We know that what is good for the heart is good for the head,” says Dr Clare Walton, research manager at the Alzheimer’s Society. “People who are physically active throughout life have a reduced risk of developing dementia – although that doesn’t just mean running marathons. It’s anything that gets your heart rate up for 30 minutes or more, like taking a brisk walk, a game of tennis or a dance class.”
Opinions are mixed as to whether keeping our minds active might have a positive impact on delaying the symptoms of dementia. However, NICE guidelines on the management of dementia recommend the use of group cognitive stimulation therapy (CST) for people who are living with mild to moderate dementia, irrespective of drug treatments received.
Group CST treatment involves 14 or more sessions of themed activities, twice a week. These sessions aim to actively stimulate and engage people living with dementia, while providing an optimal learning environment and the social benefits of a group. The results show that CST can lead to significant benefits in people’s cognitive functioning and language skills – in a comparable way to those reported with currently available anti-dementia drugs. Participants and their carers also report improvements in their mood, confidence and concentration.
More recently, a one-to-one individualised version of CST, known as iCST, has been developed. In theory, this can be offered by families, carers or health professionals, which could open up opportunities for community pharmacy to get involved.
There doesn’t appear to be any definitive evidence that social interactions alone can ward off dementia. However, Anne Child, pharmacist and dementia specialist lead at The Royal Masonic Benevolent Institution Care Company, says there is a real drive in all types of dementia research – social as well as medical – to understand how to support those living with the condition, including how things like art and music therapy might help.
Anne says another key point to remember is that everyone living with dementia is an individual. “This means some will derive wellbeing from close social interaction, whereas some are more private,” she explains. “The important thing when supporting someone living with dementia is that you understand who they are, their background, and the things they may enjoy, and you are able to support their access to those things. You also need to keep an open mind about new things they might want to experience as an individual approach is really important.”
Becoming a Dementia Friend is now a key part of the quality payments scheme, so what does this mean for pharmacy staff?
According to PSNC, the quality criteria is that: “On the day of the review, 80 per cent of all pharmacy staff working in patient facing roles are trained Dementia Friends”.
The Dementia Friends initiative is centred around giving people an understanding of dementia and the small things that could make a difference to people living with dementia in their community. It has been developed by the Alzheimer’s Society, is supported by Public Health England (PHE) and forms part of the Prime Minister’s “Challenge on Dementia”.
Dementia Friends Information Sessions are run across England and Wales by volunteer Dementia Friends Champions, who are trained and supported by the Alzheimer’s Society. Sessions are open to all ages, although under 18s need to be accompanied by an adult. Each session lasts for around one hour, and there are online sessions available as well.
Pharmacist Suzanne Hill is currently a PHD student at the University of Bradford, studying medicines optimisation at transition for people living with dementia. Suzanne agrees that the person-centred approach should be kept at the core of every interaction with those living with dementia.
“There are many different types of dementia and people experience it in different ways,” she says. “There is a very strong drive for people to be empowered and involved in their own care, so the first thing to understand is how the person feels about dementia. Do they want more information about dementia, about services, or about peer support perhaps?”
However, because everyone takes in information differently, Anne says it is important to also look at how you signpost. “For example,” she says, “you may need a quieter area in the shop to talk to them, or you might have to talk to them differently or give visual rather than written information.”
Gillian agrees that the pharmacy can provide a safe and calm environment where customers can feel comfortable discussing dementia. “Pharmacy teams can offer sufficient time with customers to talk to them in an understanding, patient way, bearing in mind that there are many different types of dementia that can affect customers in different ways,” she says. “Becoming a Dementia Friend is now a key part of the quality payments scheme. Being a Dementia Friend means that pharmacy staff have an understanding of what it is like living with dementia – as a patient, a relative and as a carer. It’s about the little things that can make a difference to someone, such as giving time to help them count their change in the store, or chatting about something the patient is interested in to help them to recover memories and keep their mind active.”
There is also the possibility that community pharmacy staff might be the first to pick up early warning signs of things not being quite right with a customer, so you need to think about how you can support and encourage people to see their GP without worrying them. Anne stresses: “You have to be careful, because an issue with memory can be all sorts of things which are treatable. Bear in mind that people need the right support when they are ready. Everyone receives a diagnosis as an individual and it means different things to different people. The idea is to make the diagnosis well and break it well so people are aware of the support that is in place, and pharmacy can help with this.”
Suzanne adds: “Of course, as well as the person living with dementia, there is often also a family member living alongside and helping that person, so it’s important to take account of both those people’s needs. For example, just as the person living with dementia doesn’t want to be talked over, so the person caring also doesn’t want to have that person talked over.”
Patience is another key element of any interaction in the pharmacy, as Babir Malik, Weldricks teacher practitioner at Bradford University, explains: “The community pharmacy is a fast-paced environment, but staff can help by taking a moment’s pause when dealing with patients with dementia. For example, if someone is struggling to remember the date when filling out the back of a prescription, there is no need to hurry them along.”
The team at LloydsPharmacy in Clive Parade, Swindon, raised more than £700 for the Alzheimer’s Society during Dementia Awareness Week in May this year, with fundraising activities designed to raise awareness of dementia as well as money.
As well as persuading pharmacist manager Sai Jammigumpula to volunteer for a soaking in aid of charity, staff ran a tombola, raffle and a cake sale, and offered customers free health checks based on the risk factors associated with dementia, such as diabetes, blood pressure and cholesterol.
The driving force behind the initiative was supervisor Tina Ledbury, whose father is living with dementia, and her daughter Vikki. Tina said: “This is a cause very close to my heart and we wanted to raise awareness as well as get donations during this week. Dementia is a condition which affects so many people and people have been coming into the pharmacy to share their stories or to ask for advice, which is exactly what we were hoping for.”
As if day-to-day activities weren’t enough to cope with, the majority of people with dementia live with at least one other health condition, and they may depend on a cocktail of drugs, which presents its own challenges.
“In the early stages, the person living with dementia can usually manage their own medicines,” says Suzanne. “So community pharmacy can help by finding out what ordering systems they have in place, if they are working and what support they may need with that. Maybe a medication review with the pharmacist could be helpful, as this can pick up whether they are taking any medicines they don’t need, as well as if they are finding anything challenging about taking a particular medicine. If family members are helping the person take their medicines, they can also find managing this quite stressful, so community pharmacy can help here too with advice and support.”
As with any condition, Anne says: “There is no ‘one size fits all approach’, so we need to work with people living with dementia to find out what they want for themselves. Our role is to support people to do what they wish to do, while they can. We have to move away from all the negative connotations that the word dementia brings up, and see the person living with dementia rather than just the condition itself. At every point in people’s living with this disease, it is important that we maximise their wellbeing. Medicines treat disease, but pharmacy staff are part of caring for a whole person, so we have to make sure we support their wellbeing as well as their physical health. Being open to supporting people may help them be in control of what they are trying to do for longer, and that is the best outcome for everyone.”
Losing the ability to speak is a later and lesser known symptom of dementia – and one that Stephanie Mizon, head of corporate communications at Well, pledged to raise awareness of by staying silent for 24 hours during Dementia Awareness Week.
Reflecting on her experience, Stephanie says: “It was exhausting, frustrating and surprising. I didn’t expect it to be so difficult and it has opened my eyes to what people with dementia have to overcome on a daily basis.
“Other people were the biggest challenge – some colleagues were visibly impatient because communication is obviously slowed down when you have to write everything down or find new ways to get your message across in meetings. Some people just stopped connecting with me altogether and I felt very isolated.”
To support the “United Against Dementia” campaign, the company also ran a series of dementia awareness sessions, raising its number of Dementia Friends to 6,159 – 88 per cent of the Well organisation.
Our role is to support people to do what they wish to do, while they can