Dementia

How pharmacy can provide patient-centred care for dementia patients

Each person’s experience of mild cognitive impairment and dementia will be quite different. Pharmacists and pharmacy teams are well placed to assist in both the early identification of dementia, as well as to help patients manage their medicines.

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Around two-thirds of patients with dementia in the UK live in the community, while a third live in a care home which means that people working with medicines in all sectors will frequently come into with patients with dementia, their families and carers.

Dementia is a collective term for diseases of the brain that can affect reasoning, perception and memory,[1] and its incidence increases with age. Around one in six people aged 80 years and over are affected by dementia; this means that people working with medicines in all sectors will frequently come into with patients with dementia, their families and carers[2].

In the UK, around 25% of adults admitted to an acute hospital have dementia, although not all will have received a formal diagnosis[3]. A number of reasons exist for the lack of a formal diagnosis, including a reluctance by individuals to see their GP when problems arise, and the under-recognition of the need to refer patients for assessment and subsequent diagnosis by health and social care professionals[4]. Two-thirds of patients living with dementia in the UK live in the community, while only a third live in a care home[5]. Pharmacists and pharmacy teams are, therefore, well placed to assist in both the early identification of dementia, as well as to help patients manage their medicines. A recent feature published in The Salvadore examined the developing role that community pharmacy can play in medicines optimisation in dementia[6].

Each person’s experience of mild cognitive impairment and dementia will be quite different. Patients with Alzheimer’s, subcortical vascular dementia, frontotemporal dementia and dementia with Lewy bodies (DLB) typically experience a continual, often slow, decline in their cognitive function allowing a degree of anticipatory care planning by the patient, family and the health and social care team. By contrast, people with stroke-related vascular dementia will periodically experience a sudden and significant drop in cognitive function and may need a corresponding sudden increase in support[7].

This article describes the features of dementia that affect a person’s ability to manage their medicines and capacity to make decisions and the adjustments pharmacists and healthcare professionals need to make, in terms of behaviour and language, in order to provide patient-centred care. Evidence of the risks of anticholinergic medicines, particularly antipsychotics, is presented and a pathway for conducting medication review in this challenging clinical situation is suggested.

Mild cognitive impairment and early dementia

In the early stages of dementia, maintaining as much independence as possible while continuing to undertake activities associated with normal daily living is very important to a patient’s wellbeing[8]. Patients with early Alzheimer’s may forget words or where they have left something, or may find it more difficult to solve problems and express their thoughts and feelings clearly. They may seem subdued or withdrawn to people who know them well[7].

Patients with early vascular dementia typically have fewer problems with memory but could struggle with mood swings, depression and emotional lability[7]. In patients with early DLB, alertness and attention can fluctuate throughout the day, day to day, commonly with accompanying visual hallucinations[7].

In early frontotemporal dementia, apathy and personality changes such as lack of inhibition or repetitive behaviours are common[7]. Managing medicines can be a complex task and there are a number of ways pharmacists and other healthcare professionals can support patients with their medicines as their cognitive function declines[9]. In order to provide effective support, pharmacists and healthcare professionals should be person-centred in their approach; remembering what works for one patient may not help another with a different type of dementia, educational background, lifestyle, values, social services or family support[9],[10]. This may explain why published tools for the standardised assessment of a person’s capacity to manage their own medicines have not demonstrated good validity and reliability[11].

Using appropriate language

When speaking about patients with dementia, the language used is important and has the power to enable a person or to stigmatise them[12]. For example, ask yourself if you would prefer to ‘live well’ with dementia or to ‘suffer from’ it? Language should concentrate on what the patient can do, and how they can maintain independence, rather than focusing on what they cannot do[12]. Ensuring that there is a quiet area available within each community pharmacy for discussions with patients may also be helpful.

Pharmacy support for patients with mild cognitive impairment who forget their medicines

Pharmacists and pharmacy teams can offer support to patients with mild cognitive impairment in a number of ways, some of which are included in the Greater Manchester’s dementia friendly pharmacy framework[6].

Whether the support takes the form of providing extra help with prescription ordering, collection and delivery, helping find solutions to help with medicines adherence or signposting patients to additional services or organisations who may be able to provide more specialist help, it is important that the approach is individualised to each patient. Box 1 provides additional guidance on how pharmacists can support patients with mild cognitive impairment who forget their medicines in practice.

Box 1: How to support patients with mild cognitive impairment who forget their medicines in practice[13]

1. Understand the problem.

  • Is continuity of supply a problem?
  • Is the patient forgetting to order?
  • Is the patient forgetting to take medicines?
  • Is the patient unable to remember that medicines have been taken?
  • Pharmacists should ask patients about their good days and bad days; any solution to these problems has to work on the bad days.

2. Consider if there are any potentially reversible causes of confusion or poor memory present.

  • Examples include: history of alcohol use, signs of acute infection, anticholinergic drug therapy, hyponatraemia or recent head trauma;
  • Pharmacists may need to refer patients to an appropriate practitioner.

3. Check that the patient understands the value added to their health by this medicine.

  • Patient who ‘always forgets’ a medicine may, consciously or otherwise, be choosing not to take it.

4. Help the patient identify the options available to them and then choose the one they prefer. Examples include:

  • Prescription repeat, collection and/or delivery service through their community pharmacy;
  • Linking tablet taking with another activity (e.g. making a cup of tea, the 6pm news, etc);
  • Recording tablet taking (e.g. on a calendar or in a diary);
  • Switching to an alternative therapy which has a calendar pack/simpler dosing instructions or a different adverse effect profile;
  • Using a prompt card, listing all medication and the reason for their use reminds patients which tablets to take and when. Ideally, a healthcare professional should complete the information about medicines. are free of charge and can be helpful, see the North West London CLAHRC website for details.
  • Some patients may require support from a family member;
  • Using a monitored dosage system may be helpful if a regimen is complex, or if a carer is prompting medication. However medicines are then used off-licence and many are not stable in mediboxes. Some people dislike the loss of knowledge and control over their medicines. Any deficiency in performance on indicates that a person is not competent to fill their own medibox[14].

5. Assume that the patient has capacity to give informed consent for services unless proven otherwise.

6. If you and the patient cannot identify a solution together the local Admiral nurse.

  • have experience and expertise in positively managing the challenges that dementia brings and can provide additional support to aid management.

Moderate and severe cognitive impairment

The different types of dementia share many more similar symptoms in the later stages of disease than they do in the early stages. As dementia progresses, a patient’s confusion and memory loss increase, sleep patterns are disrupted and most activities of daily living become risky or impossible to manage independently[7]. At this stage, personality changes are more apparent and patients can become easily agitated and have unfounded suspicions[7]. They may also no longer be able to recognise family members or their own reflection.

Interacting with patients who can be aggressive as a result of their dementia is challenging; it can help to maintain eye and an open body posture, while keeping movements slow and smooth to show that you do not pose a threat to them[15]. These aggressive behaviours are an attempt by the patient to communicate, so pharmacists and other healthcare professionals should ask questions that show interest and help to determine what need is being communicated[15].

Medicines to slow their cognitive decline or manage behavioural and psychosocial problems

Patients living with more advanced dementia are more likely to be using medicines to slow their cognitive decline or manage behavioural and psychosocial problems associated with cognitive decline and these medicines bring their own challenges to prescribing and pharmacy practice[1],[16].

The use of memory drugs such as donepezil, galantamine, rivastigmine and memantine have increased for a number of reasons including a growing level of awareness among the general public, partly a result of campaigns like the Department of Health campaign for earlier diagnosis of dementias, the off-licence use of these drugs and a recent significant financial investment in research into memory problems[17].

Memory drugs often fall under a shared-care arrangement between primary and secondary care and/or a mental health trust[18]. In this arrangement a specialist team is responsible for diagnosis, initiating treatment and prescribing and monitoring the treatment until it has been established that the patient is adhering to therapy, tolerating it and responding clinically. This means memory drugs may not appear on a patient’s repeat prescription or GP summary for some time after initiation and can be missed during medicine reconciliation at transfer of care. For more information on communication during transfer of care, see[19]. It is important for the service starting a memory drug to communicate with everyone involved in the person’s care, including pharmacists, so that all healthcare professionals are aware of the treatment plan[18]. The pharmacist in that specialist team should ensure that the communication system is robust and includes the patient’s community pharmacy as well as their GP. Pharmacists should ask the patient’s family or carer whether any medicines are prescribed by a specialist. This will help identify memory drugs prescribed under a shared-care agreement or on a private prescription.

When a patient stops taking their memory drug, or misses a few doses because of inaccurate medicine reconciliation at transfer of care, their rate of cognitive decline increases[18]. Once cognitive function is lost, it can never be regained and many hospitals treat memory drugs as critical medicines that must not be missed.

It is worth noting that there is a significant pharmacodynamic drug interaction between memory drugs and medicines with anticholinergic properties, the anticholinergic(s) should be stopped whenever possible[20]. Using two or more medicines with anticholinergic properties can reduce brain function by around 4%[21]. For a person with normal brain function this would mean a slow, sluggish day, but if a person has a normal (age-related) cognitive decline or a more advanced cognitive impairment it could make them confused or unable to cope with their usual activities of daily living and may be misdiagnosed as a progression of the dementia. Further information on the anticholinergic burden of medicines can be found in Box 2.

Box 2: Anticholinergic burden of medicines

Long term use of medicines with anticholinergic side effects by older people can impair cognition and increase falls risk, morbidity and, possibly, mortality[1]. It can also cause constipation and urinary retention. Each person is susceptible to anticholinergic side effects to a different degree but people living with mild dementias appear to be more susceptible to the cognitive side effects[22].

A number of anticholinergic risk scales exist, the Anticholinergic Burden Scale (ACB)[23] is a literature-based consensus scale that can be useful to identify/target patients who could benefit from a medication review[24], examples are included in the list below, but this is not exhaustive.

ACB score 1 (insignificant or mild effect):

  • beta-adrenoceptor blockers;
  • digoxin;
  • haloperidol;
  • morphine;
  • ranitidine;
  • risperidone.

ACB score 2 (mild or moderate effect):

  • carbamazepine;
  • methotrimeprazine;
  • pethidine.

ACB score 3 (moderate or severe effect):

  • amitriptyline;
  • chlorphenamine;
  • hyoscine;
  • oxybutynin;
  • tolterodine;
  • quetiapine.

Side effects

Urinary incontinence is common in patients with dementia, but it is also a side effect of memory drugs. It can present for the first time when a sedative medicine is given to help a patient with dementia normalise their sleep/wake pattern because they don’t wake to pass urine. Failing to recognise this can result in an inappropriate prescription of an anticholinergic medicine to treat incontinence[25].

Use of antipsychotics

Around 90% of patients with dementia will experience behavioural and/or psychosocial problems (sometimes called behavioural and psychological symptoms of dementia (BPSD), or challenging behaviour) such as restlessness or shouting[1]. The majority of BPSD resolves spontaneously within four weeks without drug treatment, presumably because there is a transient underlying physical or environmental cause[26]. Some patients experiencing severe BPSD are prescribed antipsychotic medication because they have become extremely distressed and/or present a risk to themselves or others.

Antipsychotics are thought to be effective in around 20% of BPSD cases; this means the majority of people receive no benefit from their prescription[1]. In patients with dementia, antipsychotic treatment is associated with a two-fold increase in mortality (often associated with pneumonia) and a nine-fold increase in the incidence of stroke or transient ischaemic attack in the first four weeks of therapy[1]. In addition, antipsychotics are associated with a number of adverse effects that can reduce the patients’s wellbeing.

In DLB or Parkinson’s disease, dementia antipsychotics can cause life-threatening neuroleptic sensitivity reactions that may manifest as severe or worsening extrapyramidal symptoms or non-specific physical deterioration[1]. Only a practitioner with a specialism (e.g. a psychiatrist or a geriatrician/GP/nurse consultant) should prescribe an antipsychotic in DLB[17].

It has been shown that sometimes antipsychotics are prescribed long term for people with dementia without a valid indication[1]. As a chemical restraint the Mental Capacity Act requires that these medicines must only be used if they are in the person’s best interests[27]. If the person is in a care home or hospital, not detained under the Mental Health Act and the medication deprives them of their liberty then additional safeguards are needed and an application must be made to the Local Authority[28]. The Social Care Institute for Excellence is a good source of further information on the Mental Capacity Act and Deprivation of Liberty safeguards. They advise: “Care providers don’t have to be experts about what is and is not a deprivation of liberty. They just need to know when a person might be deprived of their liberty and take action”[29].

For more information on when medicines may be considered to manage aggressive behaviour and how to assess patients to avoid inappropriate use, see[30].

Prescribers experience a number of interdependent psychological and social barriers to discontinuing antipsychotic medicines, particularly where the original indication for the medicine cannot be established[31],[32] and these can be successfully surmounted where a GP has support from a multidisciplinary team that includes a pharmacist, the patient where possible, their family and carer(s)[33]. It adds value to a patient’s care to attempt withdrawal if there is uncertainty about the ongoing need. A patient’s wellbeing and engagement with life can improve noticeably when an antipsychotic is withdrawn [1],[33]. Box 3 provides information to aid practice in relation to how pharmacists can review an antipsychotic medicine for a person with BPSD, while Box 4 provides more information on non-pharmacological approaches that are effective for managing BPSD in patients with dementia.

A number of additional resources that pharmacists and healthcare professionals may find useful on the care of patients with dementia are included at the end of this article.

Box 3: How to review an antipsychotic medicine for a patient with behavioural and/or psychosocial problems or challenging behaviour[26],[33],[34]

1. Confirm the indication.

  • If the patient has a co-morbid psychotic illness (e.g. schizophrenia, bipolar disorder or psychotic depression) then treatment should not be discontinued, except on the advice of their psychiatry team;
  • For BPSD, establish the target symptom(s) for the prescription using specific and detailed language (e.g. ‘physical violence toward care staff when providing care’ or ‘extreme distress as a result of visual hallucinations’).

2. Does the person have Lewy Body Dementia or Parkinson’s disease?

  • If the antipsychotic was not started by a psychiatrist or an experienced geriatrician/GP with special interest in dementia/specialist dementia nurse, refer the patient for urgent review by a prescriber with those credentials.

3. Have the risks and benefits of antipsychotic therapy been shared with the family, carer or advocate?

  • The Alzheimer’s Society has a fact sheet that you can use to support that conversation.

4. Monitor for effectiveness and adverse effects after one week.

  • Has the target symptom improved since the medicine was started and to what degree?
  • If the symptom has not improved, or improved only a little, a dose increase could be tried for another week. If the symptom has resolved since the medicine was started, continue treatment for another two weeks and then review with a view to discontinuing it;
  • Is the patient experiencing sedation, extrapyramidal signs, falls, postural hypotension, ankle oedema, constipation, and does this outweigh the benefits they have seen?

5. Stop the antipsychotic as soon as appropriate.

  • If the antipsychotic has not helped the symptom after two weeks, the risks of continuing it outweigh the benefits and it should be stopped; tapering is not necessary;
  • If the symptom resolved after the antipsychotic was prescribed and discontinuation is being attempted, taper the medicine to zero over 2-4 weeks;
  • The more severe the symptom was, the more likely it is to recur when the antipsychotic is withdrawn, so it is important to agree with the patient’s family and carer how the symptom(s) will be monitored and what will be done if the symptom returns;
  • Sometimes a long-term prescription is needed because it is helping a symptom but it should be reviewed for effectiveness and adverse effects every six months;
  • It is likely a healthcare professional would be made aware quickly if the symptom worsens but they should also be aware that the symptom may resolve as the dementia advances.

6. Review the patient once a week during dose tapering and one to two weeks after the medicine stopped.

  • Check with family and carer(s) each time how they think the person is managing at lower doses or without the medicine.

Box 4: Non-pharmacological approaches that are effective for managing BPSD in people with dementia[17],[25], [35]

Exclude an underlying, treatable cause such as pain, excessive noise or change in routine.

Identify factors that trigger the behaviour and provide care in a way that avoids them.

Seek information from friends, relatives and carer(s) about strategies that can help and about the person’s routine, preferences and things that are important to them. Understanding what was and is significant in the person’s life can help us understand and avoid challenging behaviours.

Introduce sleep hygiene measures (e.g. avoiding caffeine in the evening, reducing daytime naps to a minimum, having a bedtime routine, keeping the bedroom dark and quiet) where behaviour is more troublesome or distressing at night time.

Engage the patient in meaningful and/or creative activities.

Physical exercise.

Alternative therapies such as music, light, reminiscence and aromatherapy may also be useful. For an overview of available non-pharmacological therapies for dementia see[36].

Useful resources

  • is an Alzheimer’s Society Initiative. An online video or face-to-face session gives insight into what it is like to live with dementia and the small but important ways we can all help someone with dementia feel understood and included in their care and everyday life.
  • How dementia friendly is your hospital? , the NHS self-assessment resource for creating dementia friendly hospitals

Citation: The Salvadore DOI: 10.1211/PJ.2017.20203385

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