Medications used in dementia: their management and the role of the community nurse

Treatment of cognitive symptoms of dementia

The development of treatments for dementia in recent decades has largely concentrated on Alzheimer's disease, partly because it is the most common form of dementia and partly because scientific progress has provided more therapeutic targets for Alzheimer's than other forms of dementia (Jones, 2021). Alzheimer's disease is responsible for about 75% of all cases of dementia on its own or with other forms of pathology, such as vascular disease (referred to as mixed dementia).

Alzheimer's disease features abnormal accumulation of amyloid plaques and tangles in the brain (Taylor and Underwood, 2021). These plaques and tangles build up and interfere with the normal functioning of brain cells. In addition to this, there is also a deficiency of the neurotransmitter acetylcholine, which plays a part in learning and memory (Attems and Jellinger, 2021), and this deficiency worsens over time.

The medications used are guided by the NICE (2011) technical appraisal 217. In most cases, these are the three acetylcholinesterase (an enzyme that destroys acetylcholine) inhibitors (AChEIs) licensed for use in mild to moderate Alzheimer's disease: donepezil, rivastigmine and galantamine, (although use may often continue in advanced dementia). The medications act by increasing the amount of acetylcholine at the sites of neural transmission. Table 1 lists the possible side effects of these medicines.

Donepezil (Aricept) is beneficial for people with mild, moderate and severe Alzheimer's disease and is associated with improvement in both cognitive function and activities of daily living (Birks and Harvey, 2018). If well tolerated, the dose is increased. It is also available in oro-dispersible and transdermal patch formulations, which are useful for patients who develop swallowing difficulties as their illness progresses.

Rivastigmine (Exelon) was licensed for the treatment of mild to moderately severe Alzheimer's disease. The dose is titrated upwards, usually at 2-week intervals, if well tolerated. Side effects such as nausea and vomiting can be experienced in higher doses and are more frequent in comparison to donepezil (Table 1) (Jones, 2021).

As with Aricept, transdermal patches are available, which can help with compliance and tend to be better tolerated than the oral form of the drug. While the patch can be moved around the body to avoid the possibility of any localised irritation, there is a risk of allergic contact dermatitis. In some cases, this may indicate a sensitivity to rivastigmine in any form (Electronic Medicines Compendium (EMC) UK, 2018). Rivastigmine is also licensed for mild to moderate stages of dementia with Lewy bodies (DLB) and Parkinson's disease dementia (McKeith et al, 2000).

Galantamine (Reminyl) is licensed for the treatment of mild to moderately severe Alzheimer's disease. The starting dose can be increased if well tolerated. There is an extended-release preparation, which enables a single daily dose regimen that could be useful in gaining compliance. Galantamine is also available as an oral solution, which may be useful if the patient is experiencing swallowing problems. Its side effect profile is similar to other AChEIs (Table 1). Treatment can switch from one AChEI to another, largely where there is an intolerance to one, usually because of gastrointestinal related side effects. In such cases, an alternative compound may be better tolerated (Jones, 2021). Memantine has a different type of action as it is protective of brain cells by blocking harmful effects of N-methyl-D-aspartate (NMDA). Memantine is now licensed for the treatment of moderate to severe Alzheimer's disease.

The starting dose may be increased if well tolerated. Memantine can be used for those who are intolerant of, or have contraindications to AChEIs, such as cardiac conduction problems or chronic lung disease (NICE, 2018). Memantine has a different side effect profile to AChEIs, with gastrointestinal side effects being uncommon (Table 1).

All three AChEIs have a similar side effect profile that community nurses should be familiar with and thus be well placed to both observe and monitor. The most frequent side effects are because of the cholinergic effects of the medications on the gastrointestinal system, often causing nausea, dyspepsia or diarrhoea.

The emergence of side effects can often be related to an increase in dose, so the patient may tolerate the medication better if the amount is lowered to the previous dose. However, although rarer, there are more serious side effects to be aware of, such as various forms of heart blockage. Therefore, the patient's heart rate and electrocardiogram (ECG) results are often monitored during the use of these medications (Sandilyan and Dening, 2019).

Balancing pros and cons

All AChEIs can have an alerting or stimulating effect and can cause sleep disturbance or nightmares. However, with certain causes of dementia there is evidence to suggest that some of these medications may have a beneficial effect on apathy, but would need specialist prescribing (Azhar et al, 2022). There is often a balance to be struck to try and optimise the person's tolerance to the medication, for example, giving the medication in the morning rather than evening may help. Although night-time administration may mitigate other unwanted side effects, such as dizziness which can increase a person's risk of falling.

AChEIs have the potential to slow the heart rate; an ECG is recommended before their use and it is important to avoid prescribing these medications when a person's pulse is less than 50 beats per minute. It is crucial to first investigate the causative factors of such a low pulse (Jones, 2021).

Do acetylcholinesterase inhibitors work?

When AChEIs were first introduced, it was proposed that they could delay cognitive decline and transition into institutional care and increase survival rates. However, there remains little evidence to justify these claims. What is found useful is that their alerting, attentional effect causes the person with dementia to be more focused and spontaneous for a period of time, but then continue to decline (Sandilyan and Dening, 2019).

Research is also emerging to suggest that AChEIs can reduce the load of medications in patients with Alzheimer's disease by also addressing other comorbidities, such as some behavioural problems. Therefore, using one drug to address multiple symptoms will reduce polypharmacy and costs, and improve medication compliance (Kaushik et al, 2018).

Treatment of non-cognitive problems in dementia

Dementia may give rise to a range of symptoms affecting a person's psychological state, their behaviour and their biological functions. These non-cognitive symptoms are often referred to as the behavioural and psychological symptoms of dementia (BPSD) (Bishara, 2021). However, the term BPSD has been challenged by some experts, as it places too much emphasis on behavioural changes being a sign of worsening dementia (Pepper, 2024), whereas these behaviours may arise from a multitude of issues.

BPSD may be subdivided into the following groups: mood symptoms, psychosis, behaviour change and biological symptoms (which include sleep and appetite) (Pepper, 2024). In considering the treatment of BPSD, it is important to emphasise that non-pharmacological approaches should always be considered first (NICE, 2018). This would include trying to understand the cause of the problem, allowing the person to explore their feelings, offering suitable support and enhancing their social contact and activities wherever possible (Pepper, 2024).

Mood and psychological problems

Depression and anxiety are the commonest mood symptoms and may occur in 50% or more of the people with a diagnosis of dementia at some point throughout the condition (Figure 1). For example, while depression may be an early sign of dementia and precede the emergence of cognitive changes, it may also arise as a consequence of receiving the dementia diagnosis or because of negative thoughts about their future (Bennett and Thomas, 2014). Antidepressant treatment is usually considered if the depression is of at least moderate severity and is persistent, perhaps with feelings of hopelessness about the future, or limiting the person's day-to-day functioning (American Psychiatric Association, 2022).

The most commonly used medications are selective serotonin reuptake inhibitors (SSRIs) such as sertraline. However, antidepressants may be less effective in depression associated with dementia, rather than for depression occurring without dementia (Dudas et al, 2018), and people with dementia may experience more side effects.

Depressive symptoms in dementia often resolve spontaneously without treatment (Banerjee et al, 2011), so it is sensible to be cautious with dosage and using combinations of treatments. Antidepressants may also be useful in treating emotional lability, where the person may be moved to weeping for little or no reason at all. This state is relatively common in, but not limited to, vascular dementia.

Anxiety is often associated with symptoms of depression and may improve with the treatment of depressive symptoms. The medications used for anxiety are far from satisfactory (Kwak et al, 2017). They include benzodiazepines (for example, diazepam, lorazepam), which may be effective for short-term use but continued use is not recommended; antipsychotic drugs, which can cause unacceptable side effects; and antidepressants, if the person is also significantly depressed.

Psychosis

The term psychosis embraces delusions, hallucinations and misidentifications. While visual hallucinations are characteristic of DLB, symptoms of psychosis can occur in any form of dementia (Aarsland, 2020). They arise from impaired processing and recall of sensory and other information. For example, if a person has moved an item to what they feel is a safe place and then forgets they have done so, they may develop a fixed belief that the item has been stolen and/or there have been intruders in the house who have taken it.

Misinterpretations may include images on TV, or reflections from mirrors or windows, being interpreted as intruders in the room. However, sometimes hallucinations may simply be associated with sensory impairment (hearing, vision) without there being any significant cognitive impairment and often does not require drug treatment.

In general, hallucinations do not respond well to antipsychotic treatment and delusions and misinterpretations only require medical treatment if they are causing a lot of distress, or if there are associated risks such as aggression towards others (Bishara, 2021).

However, there has been much concern about the use of antipsychotic medications in people with dementia as these have many side effects, such as sedation and falls, and also create an increased risk of stroke or death (NICE, 2024). Therefore, it is important to be cautious in prescribing, using the lowest possible dosage and looking to discontinue treatment after a few weeks wherever possible (Bishara, 2021).

Behaviour changes

Changes in a person's behaviour commonly occur in dementia, particularly as the condition advances in severity (Cloak and Al Khalili, 2022). Behaviours may include agitation, apathy, verbal and/or physical aggression, wandering about, vocal behaviours such as shouting, and sexual disinhibition.

Agitation often presents as a combination of excessive, often undirected motor activity and subjective distress, and is often associated with aggressive behaviour (Wolf et al, 2018). The most important aspect of managing agitation is its assessment, and to try to establish whether there is any underlying cause, for example depression, pain or other medical condition (Harrison Dening, 2020). Medication treatments for agitation can be problematic (Carrarini et al, 2021). Antipsychotic medications have modest effectiveness but, as previously mentioned, side effects limit their usefulness.

Apathy is common in dementia and can persist throughout the condition. It is a lack of emotional responsiveness, motivation and interest, and is partly cognitive, partly emotional and partly motivational in nature. Its presence is associated with worse outcomes for people with dementia (Dening et al, 2021).

Apathy can also be very frustrating for family carers, who may sometimes believe that the person with dementia is being deliberately inactive. As with many other symptoms of dementia, the most useful approaches are psychosocial interventions, with medications having a limited effect.

Biological symptoms

Changes in eating and appetite are often affected by swallowing difficulties and may require input from dietitians and speech and language therapists, who can provide swallowing assessments and advice (Abdelhamid et al, 2016). Patterns of sleep change with ageing, with more waking in the night and frequent daytime naps. However, these changes are more marked in people with dementia.

The management of sleep problems is based on thorough assessment, followed by simple measures such as increasing the person's daytime activities to avoid daytime sleepiness and avoiding caffeinated drinks later in the day (Zhao et al, 2018).

Sleep medications, such as zopiclone, are effective for short periods but tolerance may develop and the medications may have side effects, such as over-sedation and falls. Rapid eye movement sleep disorder is a common problem in DLB, and may require specialist consideration and prescribing (Bishara, 2021).

Managing medical illnesses in dementia

Most people with dementia are aged over 75 years and many of them may have other illnesses or long-term conditions. Physical health problems and dementia can interact in various ways, with each illness increasing the impact of the other to produce greater functional impairment.

An example might be where a person has both heart disease and dementia; these may interact to impair the person's mobility and their ability to make social contacts. It can exacerbate difficulties and result in social isolation, which may further impact their dementia. Physical health problems can have an adverse effect on a person's mental state, for example, pain can lead to depression and lower wellbeing and quality of life (Harrison Dening, 2020).

If a person with dementia is admitted to hospital with an acute physical illness, they are likely to develop delirium, and this in turn can have implications for health and social outcomes, such as longer lengths of hospital stay and increased risk of death (Koskas et al, 2021).

Finally, the more conditions a person has, the more medications they are likely to be prescribed (polypharmacy), which increases the chances of side effects and drug interactions, alongside the possibility of taking the wrong dose or forgetting to take the medicine altogether (Mueller et al, 2018).

The principles of managing multiple conditions in people with dementia include having a clear care plan that is available to those involved, prescribing as few medications as possible and keeping them under regular review (Welsh, 2019). Simplifying medications such as once or twice a day, where possible, makes their management much easier to supervise. Nurses are in a prime position to support safe and effective care with respect to medication management for people with dementia and their family carers.

Nurses’ role in supporting medication

Nurses have a duty of care to ensure that any medicines administered are appropriate and therapeutic (Nursing and Midwifery Council (NMC), 2018). The nurse's role in medication management for people with dementia is multifaceted. It may include supporting the individual in safely self-administering medications, ensuring the correct dosage is taken at the appropriate times, using assistive technologies to aid adherence and monitoring the effectiveness of medications as well as any potential side effects.

A good working knowledge of medications, their indications and actions will enable them to confidently discuss medicines with the person with dementia, as well as their family members and caregivers. Medicines management involves a complex set of activities. Although current coping strategies exist to support people with dementia, they are primarily used by family carers or within the person with dementia–carer dyad (Lim and Sharmeen, 2018).

Compliance and covert administration

While adherence and compliance to prescr ibed medications may be difficult for older people, it can be particularly challenging for people with dementia. Medication compliance in people with dementia requires a good working relationship between the person with the diagnosis, the family carer, prescriber and often the nurse who may be assigned to monitor the efficacy of any medication. Whether it is ever ethically defensible to administer medications covertly to people with dementia is a complex and contentious issue.

Some clinicians believe that the deception inherent in covert administration is unacceptable, while others believe that such deception is intrinsic to providing care to people with dementia (Young and Unger, 2016). Regardless of the stance, an open approach is essential in the relationship between all parties, including honest discussions about medications—their intended benefits, potential side effects and administration schedule (Mitchell et al, 2018).

In some people with dementia, symptoms such as reduced comprehension may lead to missed medication doses. Therefore, instructions may need to be repeated frequently, especially when the person has difficulty remembering or sequencing medication intake.

In cases where it is determined that a person does not have the capacity to make treatment decisions, and that it is in their interest to take the medicine, healthcare professionals may decide to administer the medicine in a disguised form (crushed in food) to support compliance (Mitchell et al, 2018). However, such approaches require discussion and agreement from all stakeholders, especially family carers of the person with dementia.

Supporting family carers

Supporting a family member of a person with dementia for safe medication management can be challenging for all concerned. The family carer may already feel challenged by the change in their role as dementia progresses, especially regarding responsibility for the safe administration of medicines. Equally, they may be uncertain about when and how to take over medication management.

Taking more responsibility in this regard may be borne out of a need for greater safety in instances where the person they care for forgets to take medicines or takes more than the prescribed amount. This may be balanced with the challenge of maintaining the independence of the person with dementia for as long as possible, while also protecting their autonomy and dignity.

All of these issues can be challenging for family members and may lead to conflict, such as when attempting to support compliance or when caregiving becomes burdensome (While et al, 2013). Healthcare professionals may often be unaware of this burden (Mitchell et al, 2018).

Polypharmacy

Polypharmacy (the use of ≥5 different medications) and potentially inappropriate medication are well-known risk factors for numerous negative health outcomes and are widespread in the older population, especially in people with dementia (Frahm et al, 2021). The term ‘appropriate polypharmacy’ refers to the use of multiple medications that provide therapeutic benefits, helping the individual maintain an optimal quality of life (Duerden et al, 2013). Whereas ‘problematic polypharmacy’ is when multiple medicines are inappropriately prescribed (perhaps with no consideration to the effect each has on the other) and the person does not derive adequate therapeutic benefit from them (Duerden et al, 2013).

However, the risks of polypharmacy and potentially inappropriate medication in people with dementia is not well-described (Kristensen et al, 2018). This could have negative implications for patient safety, especially in community-dwelling people with dementia who are largely supported by family carers, and demonstrates the need to improve medication management in this population (NICE, 2018).

Nurses are ideally placed to support medication management in people with dementia, either directly in roles such as practice nursing and community nursing, or in educational roles with family carers or social care staff. Regular assessments, involving the person with dementia, their caregivers, family carers and the wider multidisciplinary team, are essential for comprehensive medication management.

Conclusions

Medications form an important domain within a biopsychosocial response to care for people with a dementia diagnosis. This requires nurses and other health and social care staff to have a good understanding of the indications and underlying need for any treatment or intervention.

It also involves having knowledge of the various prescribed medications, their beneficial effects, observing for any potential adverse or side effects and their safe administration through providing information and guidance to achieve compliance.

Family carers also have a significant role to play in safe medication management for the person with dementia. However, family carers can often feel a sense of burden and anxiety in managing the person's medications, which is why they require knowledgeable and timely support. Nurses are in an ideal position to meet these requirements.

Key points