By Asha Fowells

Dementia awareness and diagnosis rates continue to grow but there is still much pharmacies can do to help on both counts.

 

 

There has been an explosion in dementia awareness over recent years thanks in no small part to an initiative started in 2013 by the Alzheimer’s Society, which has seen 1.5 million people become Dementia Friends. Many people, however, still believe that the condition is just a natural part of the ageing process.

While it is certainly true that the illness becomes commoner as people get older, the forgetfulness that everyone experiences during times of stress and illness certainly isn’t the inevitable start of a decline into dementia that many consider it to be.

There is an obvious role for pharmacists and their teams in this. Not only can community pharmacy continue to help raise awareness of the condition itself – which in turn increases the chance of the early diagnosis that is crucial for prolonging independent living and enabling future planning – but it can also help banish some of the myths that still abound.

So what exactly is dementia? Medically, it is considered a syndrome with progressive symptoms that fall into three broad groups:

• Cognitive dysfunction, which leads to issues with memory, language, attention, orientation, calculation and problem solving
• Psychiatric and behavioural problems, such as changes in personality, emotional control and social behaviour, which in turn can lead to issues such as depression and agitation. Hallucinations and delusions are not unknown
• Difficulties with everyday living (e.g. activities such as getting dressed, driving and eating).

There are many causes of dementia, but all stem from changes in the brain structure and/or chemistry. The commonest causes – comprising around 90 per cent of cases – are Alzheimer’s disease, cerebrovascular disease such as stroke, and the development of abnormal protein deposits called Lewy bodies inside nerve cells.

Each form may present slightly differently. Vascular cases may have a sudden onset and rapid worsening, for example, whereas someone with dementia with Lewy bodies is more likely to experience fluctuations in alertness and confusion and typically also suffers visual hallucinations.

In many cases, dementia symptoms develop and worsen slowly, making changes such as growing forgetfulness and gradual withdrawal from social activities difficult to detect. Gavin Terry, policy manager at the Alzheimer’s Society, says pharmacies are ideally located for individuals who may be concerned that they or a loved one is starting to show signs of dementia.

“Going to the GP might not be an option, perhaps because they don’t feel it is worth bothering the doctor about or because they are embarrassed, whereas they might be more inclined to bring the subject up at their local pharmacy, which is much less formal but nevertheless still a healthcare environment.”

Having leaflets on display gives customers a non-confrontational way in which to bring up the topic, but Somerset LPC took the under-diagnosis of dementia issue one step further earlier this year when it trialled a memory service. Recruitment involved identifying patients who had noticed a deterioration in or difficulty with memory or mental functioning and were prepared to undertake a basic cognitive assessment, which involved them being asked personal and general knowledge questions and their information recall being checked.

“Eleven pharmacies screened 462 patients over an eight-week period, with nearly 20 per cent of them identified as having memory loss that affected their lives,” says Matt Harvey, Somerset LPC chief officer. “Of the patients who underwent a cognitive assessment with a pharmacist, 9 per cent were referred to their GP for further testing with a view to formally diagnosing dementia. All patients were also offered a MUR to establish whether they were on any medication that might be causing problems due to anticholinergic burden.”

Details of the Somerset memory service can be found here.

 

 

Differential diagnoses

Just as important as picking up on potentially undiagnosed cases of dementia and referring such individuals for further assessment is establishing whether something else may be at play, says Gavin Terry of the Alzheimer’s Society. Becoming forgetful does not necessarily mean someone has dementia; it can also be a sign of another condition such as depression, a vitamin deficiency or an infection, he says.

“Making the odd wrong turn while following directions to somewhere new is entirely normal, whereas someone with dementia may get disorientated going somewhere they have been many times in the past and be unable to get back on track. It is vital to appreciate this difference and establish whether the changes in memory and cognition are progressive and starting to affect everyday life rather than just being an occasional slip-up.”

Another area where community pharmacy can extend the public’s knowledge base of dementia is in the condition’s management. Early diagnosis is vital from a practical point of view for the sufferer, empowering them to plan ahead while they have the capacity to make decisions about their future care and to access information and support while they are able to process it. Early diagnosis also enables access to treatments that can improve cognition and quality of life and prolong independent living.

Non-drug treatments are hugely important. Reality orientation, memory strategies and reframing thinking are all techniques that can help patients address any concerns they might have about other people finding out about their diagnosis and wanting to take over all decision-making, or fears about how and when their mental and physical capabilities will diminish.

Similarly, NICE advises considering interventions such as aromatherapy, massage, music or dance to address challenging behaviours such as aggression and apathy.

Pharmacotherapy for the cognitive symptoms of dementia should always be initiated by a specialist but is then likely to be managed and monitored in primary care. An acetylcholinesterase inhibitor (e.g. donepezil, galantamine or rivastigmine) is usually first-line treatment in mild to moderate Alzheimer’s disease, with memantine used for more severe cases or in those who cannot take one of the drugs already mentioned.

Other symptoms are usually addressed as they arise; for example, antidepressant therapy may be prescribed for someone who develops depression, and short-term antipsychotics have a place if the patient is severely distressed or is a risk to themselves or others.

The Clinical Knowledge Summary on dementia pulls together various guidance documents and research papers to give a comprehensive description of the condition and its management.

Optimising medicines use

The effectiveness of a medicine largely depends on how successful the patient is at taking it, and this is particularly relevant in dementia that involves memory loss and often some level of confusion. Nina Barnett, consultant pharmacist for care of older people at Northwick Park Hospital, stresses the importance of keeping patients at the centre of pharmaceutical care.

“Pharmacists often think they know what their patients need to learn about medicines, so they hand out a dispensed item and say it needs to be taken three times a day, assuming this is the most important information. However, it is more effective if pharmacists try to put themselves in the shoes of patients and think about what they can do and say that will be most useful. This can be as simple as asking the patient what they can do to help.”

Professor Barnett advises using open rather than closed questions. “It is easy to say: ‘Is there anything I can do for you?’ but this allows the patient to simply say ‘no’ and that’s the end of the conversation. Asking ‘what can I do for you?’ gives the patient room to think about the question and you are therefore more likely to get a response that is more meaningful to both them and you.”

There can be a tendency to ignore patients with dementia in favour of carers, but Professor Barnett says there is always value in including the patient. When beginning a consultation, she recommends evaluating the patient’s capacity to make decisions about medicines by assessing whether they can understand the information being provided, retain it, use it and communicate the decision they have reached.

If even one of the answers is ‘no’, someone else – a trusted family member or carer – needs to assist the patient in their decision-making, she says, although this does not mean they should be excluded altogether.

“As long as they can converse and retain information at some level, they can participate,” says Barnett. “Even if the patient can’t make a decision, they may still understand that they are participating and can feel if they are being ignored.”

It is important to take into account the patient’s wishes, feelings and values, at whatever level they can express them, rather than making an assumption based on your own or the carer’s beliefs, she adds. More information on assessing mental capacity can be found here.

 

 

Caring for the carers

While it is important to keep people with dementia involved in their care, it is also crucial to attend to the needs of those helping patients: the carers. The progressive nature of dementia means carers are likely to have times when they feel overwhelmed by their current responsibilities as well as fearful about what the future might bring.

Carers can often neglect their own health and wellbeing priorities in favour of those of the individual they are looking after. This is true, of course, of all carers, not just those involved with dementia patients.

The charity Carers Trust has long recognised the contribution made by community pharmacy in this area, running a pilot project last year with a view to formalising this work. During the four-month initiative, 247 carers were identified by 33 pharmacies in ten locations in England and made aware of services that could be useful to them, ranging from prescription collection and delivery to support provided by charitable organisations. The individuals were also flagged up to local carers’ services and their GP practices.

Yvette Oliver, manager at Newland Pharmacy in Hull, says she found the project a rewarding experience. All staff members were trained on how to approach customers to find out whether they were carers. They were then invited to speak to one of the pharmacy’s two “carer champions”, either straightaway or on an appointment basis. Feedback from those who had consultations was positive, she says, with carers saying that they felt less isolated, better supported and more able to talk about their situation as a result.

“Qualitative data gathered during the pilot showed that carers reported significant improvements in their health, wellbeing, financial status and employment prospects,” says Julia Ellis, Carers Trust development manager for primary care and community reach.

“Crucially, the findings showed that community pharmacies can provide an invaluable ‘golden link’ between the carer and the support that so many are currently missing out on.”

The charity is keen to roll out the carer-friendly pharmacy model, maintaining a light touch approach that:

• Highlights the practical services pharmacies can provide
• Supplies carers with information or refers them to local organisations for support rather than undertaking the work at the pharmacy itself
• Flags up individuals to GPs so their additional needs can be addressed.

Such an approach could be tied into the healthy living pharmacy model, says Julia Ellis, adding that a good place to kick things off is England’s recently launched pharmacy seasonal flu service.

“Carers are one of the eligible groups for flu vaccination, and it provides the perfect opening for pharmacy staff to make them aware of what is available and develop a long-term relationship. From the carer’s point of view, they are being invited to take a non-stigmatising and practical first step, which may then lead to them considering other forms of support.”

An additional benefit is the payment attached to flu vaccination, she says. “In effect, this means that pharmacies are now being incentivised to identify carers, something which may provide additional impetus and ensure that staff feel they have permission to offer pharmacy services and products for both the carer and the person they care for. It also has the potential to reduce demand on GP practices, as carers may be more likely to consult their pharmacy for advice on medication, minor ailments and other health-related issues.”

An evaluation of the carer-friendly pharmacy pilot project can be accessed here.

Becoming forgetful does not necessarily mean someone has dementia