People with dementia face specific challenges when it comes to taking their medicines safely and correctly. At the heart of these difficulties is that dementia, a collection of progressive neurological disorders that lead to a loss of brain function, predominantly affects older people. So not only do these people experience issues such as loss of memory, recognition and sequencing, which affects their ability to follow instructions, they also tend to be prescribed a number of medicines for other health conditions.
People with dementia often have one or two other long-term conditions and, as the dementia progresses, they sometimes forget about how… or when to take their medicines
“People with dementia often have one or two other long-term conditions and, as the dementia progresses, they sometimes forget about how… or when to take their medicines,” says Heidi Wright, policy and practice lead for England at the Royal Pharmaceutical Society. “That condition, be it diabetes or heart failure or something else, then deteriorates.”
Deterioration of a person’s comorbid condition can also have an impact on their dementia. For example, in vascular dementia, failure to correctly take blood pressure medication could lead to dementia symptoms worsening further, creating a vicious cycle.
Alzheimer’s disease is the most common form of dementia, accounting for 62% of diagnoses
. Other forms include vascular dementia, frontotemporal dementia and mixed dementia. There are currently more than 850,000 people living with dementia in the UK and that figure is expected to more than double by the middle of the century
. Community pharmacists are well placed to assist in the early identification of dementia, as well as to help patients manage their medicines. However, a wider role for pharmacists (for example, conducting medicines reviews in patients’ homes) will depend on how pharmacists’ clinical role develops.
Caring for the carers
Because of the progressive nature of dementia, people living with the disease will typically reach a stage where their care, including managing their medicines, is taken over by formal and informal carers. This means that dementia patients may stop accessing pharmacy services directly.
Informal carers are frequently a spouse, and so may be older and taking many medicines themselves. Research has found that this role around medicines management is significant for informal carers, and can lead to feelings of guilt when errors are made
And the knock-on effects of errors are not just emotional. When an informal carer finds they can no longer manage their loved one’s medication, this may jeopardise whether their partner can remain living in the family home.
Anne Child, a former community pharmacist who was awarded an MBE in 2014 for her work with patients with dementia, says that these people are now living in their own homes for longer. “We are being driven by a model of care which is more about primary care and people being cared for in their own homes, which is absolutely appropriate,” says Child, who now works as pharmacy and dementia specialist lead for the Royal Masonic Benevolent Institution Care Company. “So people do still go into residential and nursing care settings but they’re going older.” This means that those living in their own homes need more support around all aspects of care.
Courtesy of Anne Child
Child says that she takes a holistic approach to medicines optimisation. “By profession, we know a huge amount about medicines; they are our core skill. But medicines treat diseases and pharmacists care for people.”
By profession, we know a huge amount about medicines, they are our core skill. But medicines treat diseases and pharmacists care for people
Although some treatments are available to improve the symptoms of dementia, such as anticholinesterase inhibitors, there is no cure. Given that this is the case, says Child, there should be a focus on helping people to live as well as they can and preserving their existing health for as long as possible.
“We need to do far more to make sure that the people who already have their diagnosis live as well, enabled and supported as possible,” says Child.
Many of the actions community pharmacists can take to improve support for people living with dementia are quite simple and many pharmacies will be doing them already. They include things such as providing dosette boxes, offering home delivery services, proactively contacting patients about their repeat prescriptions, and providing printed lists of all medicines.
The RPS has published educational material for pharmacists on medicines optimisation for patients with dementia in April 2017
. ‘Medicines optimisation briefing — dementia’, distributed with the May 2017 issue of The Pharmaceutical Journal, outlines four main principles that focus on: the patient experience; safe and effective prescribing; appropriate prescribing; and incorporating medicines optimisation into routine practice. Steps that pharmacists can take include checking that patients and their carers understand how new medicines should be taken, asking patients about use of over-the-counter medicines, and flagging potentially inappropriate prescribing with GPs.
Conversations can be quite negative about what [patients with dementia] can’t do and there’s something about focusing on what they can still do
Source: MAG / The Pharmaceutical Journal
The briefing also advises that pharmacists should consider how they communicate with patients. “Conversations can be quite negative about what [patients with dementia] can’t do and there’s something about focusing on what they can still do,” says Wright, who worked on developing the briefing.
She adds that it’s important for pharmacists to think about how they provide information to people with dementia. “You can have a conversation but then [the patient with dementia] might forget that,” explains Wright. “So it’s about what other kind of information can you give them, like reminder charts or text alerts.” Wright says that if pharmacists notice that a patient with dementia is not coming into the pharmacy regularly to pick up their medicines, they should get in touch and check how they are getting on.
George Rook, from Shropshire, who was diagnosed with dementia in 2014, currently takes 15 tablets in the morning and 10 in the evening. He says that factors related to packaging, such as small writing, branding changes and similar-looking blister strips, can all increase the likelihood that he will make a mistake.
Courtesy of George Rook
“When the brand changes in any medication, which it often does, I have to be very aware when unpacking it and make sure I understand which it is,” says Rook. He says that he has made a number of errors in taking his medicines. “On one occasion I failed to take antidepressants for a week and could not work out why I felt so increasingly awful. After an unproductive visit to my GP, I did a reconciliation at home and found my mistake.”
However, Rook says he is reluctant to start using a pill dispenser because he feels it would signify a major step towards losing his independence.
Rook emphasises the importance of community pharmacists getting to know their customers so they know who among them has or might have dementia.
Don’t be afraid to ask; the person can always say no, but if they are not engaged with in any way they will not say when they do need help
“Ask them every time if they need any help with anything; become a community helping hand,” says Rook. “Don’t be afraid to ask; the person can always say no, but if they are not engaged with in any way they will not say when they do need help.”
Emma Bould, programme partnership project manager at the Alzheimer’s Society, agrees that this regular contact that community pharmacists have with their customers is really important for patients with dementia. It means that pharmacists are well placed to assist with early diagnosis of the condition, one of the national priorities outlined in the ‘Prime Minister’s challenge on dementia 2020’, published in February 2015
Courtesy of Emma Bould
“I think quite a lot of people find it difficult to go to the doctor. Quite a lot of people with dementia are not diagnosed because of low awareness or they might be in denial,” says Bould. “They might not know they have dementia or they might not want to come to terms with it,” she explains. Community pharmacists have a more regular relationship with their customers than other healthcare professionals, she says, so they can signpost people with dementia, or those who might have it, to services, support and advice. This can be as simple as stocking information leaflets or displaying posters of local Alzheimer’s Society services, she adds.
Pharmacies in England are now incentivised to take part in the Dementia Friends initiative, an Alzheimer’s Society programme that aims to change people’s perceptions of dementia. Since the introduction of the quality payments scheme as part of the ‘Community pharmacy contractual framework’, published in 2016, contractors can claim a maximum payment of £640 if 80% of all patient-facing staff are Dementia Friends. The Dementia Friends scheme requires people to attend a face-to-face session or watch an online video and register for an information pack.
Dementia Friends helps pharmacists and staff better understand the condition and raises awareness of some of the common misconceptions and stigma associated with [it]
Bould says that, although non-specific to pharmacy, becoming a Dementia Friend can help pharmacists to support their customers and the wider community.
“Dementia Friends helps pharmacists and staff better understand the condition and raises awareness of some of the common misconceptions and stigma associated with [it],” she says.
However, Ian Maidment, senior lecturer in clinical pharmacy at Aston University, points out that, although the Dementia Friends programme could help pharmacists feel more confident to deal with people with dementia, it won’t directly impact pharmacy medication management.
Courtesy of Ian Maidment
“It’s worth [pharmacists] doing it,” says Maidment, who has carried out research into the potential role of pharmacists in dementia care. “It’s not going to do any harm, but in itself it is unlikely to make a big difference in providing medication management services.” He adds that it may help pharmacists in the way they approach people and discuss things, but points out that it’s only an hour-long session that is not designed for clinical staff.
In Greater Manchester, where health spending is devolved, the authority has gone further towards making pharmacies dementia-friendly places. The pharmacy local professional network has developed a framework for pharmacies to become dementia friendly, involving seven key steps. Not only are staff at pharmacies required to become Dementia Friends, pharmacies are also required to think about the broader pharmacy environment, such as having a quiet place available for discussions and reviewing signage and lighting.
Pharmacies also need to put in place specific measures to help dementia patients with their medications, such as helping them to fill in their repeat prescription requests, setting reminders for them to order their prescriptions, and to consider amending the pharmacy standard operating procedure for checking proof of identification for patients who can’t remember their address (see panel 1).
In the rest of the country, pharmacies can also join up with their local Dementia Action Alliance, which brings together local stakeholders, such as businesses and organisations, to create dementia-friendly communities. The ‘Prime Minister’s challenge on dementia 2020’ aims for 50% of the population to be covered by a dementia-friendly community.
Pharmacists and technicians who want to learn more in this area can access training through the Centre for Pharmacy Postgraduate Education, which has several modules available focusing on dementia.
Child says that training is really important for community pharmacists who have the potential to offer tremendous support to people living with dementia in the community. “But it’s about how, isn’t it? How that’s commissioned, what that looks like.”
In the longer term, the ability of community pharmacists to provide broader support to people with dementia is tied up with the bigger question of how pharmacists’ clinical role will develop.
Maidment and colleagues interviewed healthcare professionals, dementia patients and informal carers about the potential role of community pharmacists in managing medicines for dementia patients. The group found that informal carers don’t tend to see community pharmacists as having a clinical role
. Pharmacists were mostly seen as being involved in medicines supply, a perception that has also been observed in other research
Lack of multidisciplinary working and access to medical records limited pharmacists’ ability to have an enhanced role in dementia care, the research found. Although pilots have been done and some local provision has been made, there is a lack of widespread funding for domiciliary pharmacy and at-home medicines reviews.
Maidment says that community pharmacists may have a role in providing clinical pharmacy services to people with dementia, such as medicines reviews, but it needs to be as part of a multi-disciplinary approach, particularly given the complexity of treatment. There are also significant barriers to pharmacists providing these services, including training needs, lack of access to records, support and supervision.
There’s no point training somebody if they don’t get ongoing support and community pharmacists are likely to need some type of clinical supervision as they develop any role
“There’s lots of people potentially who could do this and community pharmacists need to work as part of the team,” he says. “There’s no point training somebody if they don’t get ongoing support and community pharmacists are likely to need some type of clinical supervision as they develop any role.”
But Wright says that community pharmacists could do complex medication reviews for people with dementia, provided they are competent to do so. “Not everyone is going to be able to do it and not everyone would perhaps want to,” she says. “But I think if you’ve trained as an independent prescriber and you’ve got the skills and the knowledge in that area … then I think you could.”
Child says that it’s vital that all the links are in place from prescriber to patient, to ensure people with dementia get the best from their medicines. “It’s really important that we line up all the things so support is there to make sure it translates to a positive outcome,” she says.
“Dementia care has come a long way but it’s a marathon and we’re not in the final straight yet,” says Child. “We can do better.”
Panel 1: Greater Manchester’s dementia-friendly pharmacy framework for pharmacy teams
1. Pharmacy environment
- Is there a quiet area available for discussion?
- Have you considered adjustments to make the pharmacy environment more accessible for people with dementia? This may include reviewing signage, lighting and flooring.
2. Pharmacy team
- At least one member of staff has undertaken training and signed up to become a Dementia Friend.
- The pharmacist has undertaken and recorded a continuing professional development activity related to dementia.
- The team has undertaken vulnerable adults training and knows how to report concerns.
- The team has discussed how individual patients with dementia could be better supported in the pharmacy.
- The team considers adding a note on the PMR system to remind them about what support methods have been put in place for individual patients.
- The contact details of a relative or carer are routinely collected, in case of queries.
- The team considers liaising with other community pharmacies for patients who are not regular customers where there are concerns.
3. Public health and lifestyle
- Do you provide advice and information about regular exercise, smoking, alcohol and diet?
4. Over-the-counter medicines
- Have you considered how to deal with patients who make repeated requests for items already purchased?
- Do you check a patient’s change with them?
- Do you help a patient choose between medicines?
5. Prescription ordering, collection and delivery
- Do you regularly support patients to complete their repeat request slip, for example, by explaining using plain terms like heart tablet, blood pressure tablet?
- Do you support patients to complete the exemption declaration (or pre-payment form if over 60 years old)?
- Do you have the ability to set calendar reminders to prompt patients to order?
- Consider how you would help patients who are over-ordering prescription items – are patients potentially overdosing or losing their medication?
- Do you check with the GP practice if a patient is over-ordering?
- Do you have another system for checking proof of identity if a patient cannot remember their address? Do you need to amend the pharmacy standard operating procedure?
- Consider offering a delivery service and encourage delivery drivers to undertake Dementia Friends training. Ensure they are alert to medicines issues, for example, non-adherence, and report these to the dispensary team. Think about phoning patients to remind them when the delivery driver is coming and deliver at the same time each week with a note for the patient.
- Consider if the patient is suitable for the repeat dispensing service.
- Consider if the patient is suitable for electronic prescriptions.
6. Medicines adherence
- When explaining about medicines do you check that the patient understands what you are talking about – do you physically show the patient the medicines?
- Can you provide adherence aids, such as reminder charts?
- Do you put specific times of administration on medicine labels (for example, breakfast time, lunchtime) that fit with how the individual takes their medicines?
- Do you include the indication on the medicine label, for example, for pain relief, when known?
- Can you provide medicines in a monitored dosing system (MDS) in line with Royal Pharmaceutical Society guidance?
- Do you put a clear start date on the MDS so that the patient knows when to start using a pack?
- Do you flag to the patient, to reduce confusion, that the manufacturer’s brand has changed colour and/or shape?
- Do you record medicines returned in MDSs so that an adherence intervention can be made if ongoing non-adherence?
- Does the pharmacy have leaflets available about dementia?
- Do you have information about local support groups for patients and carers?
- Do you have website addresses and telephone numbers for national support groups?
- Do you routinely refer patients to the pharmacist or GP, for example, if patients are deteriorating or showing signs of dementia?
- Are you aware of and connected to the local Dementia Action Alliance/Dementia Friendly Communities initiative?
 Alzheimer’s Society. Facts for the media. Available at: https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_for_the_media. (accessed July 2017)
 Poland F, Mapes S, Pinnock H et al. Perspectives of carers on medication management in dementia: lessons from collaboratively developing a research proposal. BMC Res Notes 2014;7:463. doi: 10.1186/1756-0500-7-463
 Maidment ID, Aston L, Moutel T et al. A qualitative study exploring medication management in people with dementia living in the community and the potential role of the community pharmacist. Health Expectations 2017;00: 1– 14. doi: 10.1111/hex.12534
 Department of Health. Prime minister’s challenge on dementia 2020. February 2015. Available at: https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020 (accessed July 2017)
 Maidment ID, Aston L, Hilton A et al. Role of community pharmacists in the use of antipsychotics for behavioural and psychological symptoms of dementia (BPSD): a qualitative study. BMJ Open 2016;6:e010278. doi: 10.1136/bmjopen-2015-010278
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