Dementia is an umbrella term for progressive neurological conditions that impact an individual's memory, functioning and behaviour (Alzheimer's Society, 2023). While there are over 200 causes of dementia, Alzheimer's disease, vascular dementia, dementia with Lewy bodies and frontal temporal dementia are the most common (Arvanitakis et al, 2019). Dementia is a global priority for action, due to the increasing number of people with dementia (World Health Organisation, 2017). Projections suggest that there are nearly one million people with dementia in the UK and over half of them are living with advanced dementia (Wittenberg et al, 2020). Dementia and Alzheimer's disease are reported as the leading cause of death in England and Wales (Office for National Statistics, 2023). While dementia is a major cause of death, it is the only such disease with limited treatments to prevent, slow, or stop its progression. (Alzheimer's Research UK, 2024).
Age is the strongest risk factor for dementia. A person's risk of developing Alzheimer's disease or vascular dementia doubles every 5 years over the age of 65 years because of biological decline and increasing comorbidities (Prince et al, 2014). Many people with dementia may also have other health conditions common with old age (Cravello et al, 2019), an average of 4.6 chronic conditions besides dementia (Tonelli et al, 2018). These include osteoarthritis, genitourinary infections, constipation and pressure ulcers, and many of these conditions can cause pain (Corbett at al, 2014). It is important to note that while dementia largely affects people aged over 65 years, approximately 71 000 people dignosed with dementia are under the age of 65 years (Carter et al, 2022). They may experience fewer age-related comorbidities.
Complexities of pain in dementia
The definition of pain has evolved over time; it is generally described as an unpleasant sensory and emotional experience associated with, or resembling the experience associated with, actual or potential tissue damage (Raja et al, 2020). However, pain is also recognised as being an experience unique to each person (Fillingim, 2017). Regardless of the cause of dementia, or the point in the trajectory of the condition, people living with this condition may experience pain because of their comorbidities (Achterberg et al, 2020). However, the person's ability to self-report their pain may change as their dementia progresses (NHS England, 2020). The reasons for this are multi-factorial, such as impaired short-term memory and ability to recall pain, recognising the unpleasant sensation as being pain-related (Achterberg et al, 2020) and increasing difficulties with verbally communicating pain and distress because of receptive and expressive dysphasia (Suárez-González et al, 2021; Pepper and Dening, 2023).
Recognising pain in dementia
National guidance calls for professionals to understand how pain impacts the person, their daily lives and their care priorities (National Institute for Heath and Care Excellence [NICE], 2021a). Pain is usually communicated verbally, however when a person with dementia is unable to communicate their pain, it can present challenges for healthcare professionals (Achterberg et al, 2020). When unable to verbalise their pain, people with dementia may express pain through non-verbal communication, such as body language or behaviour including agitation and distress (Van Dalen-Kok et al, 2015), or aggression (Schofield, 2018) (Box 1). However, this can often result in their pain-related behaviors being overshadowed by the diagnosis of dementia (Tolman and Dening, 2018) and misinterpreted as behavioural and psychological symptoms of their dementia, such as aggression, agitation, disinhibition etc (Sampson et al, 2015). This adds further complexities for nurses assessing pain due to the interplay between pain and behaviour associated with dementia (Jonsdottir and Gunnarsson, 2021) and may contribute to the inappropriate use of antipsychotic medications (Achterberg et al, 2013). Antipsychotic medications can have adverse effects on a person with dementia, increasing cardiovascular risk, falls, (Chiu et al, 2015) and death (Tampi et al, 2016). Consequently, people with dementia are at risk of their pain being undetected and untreated (Lichtner et al, 2014), leading to the unmanaged pain negatively affecting the person's quality of life (Lichtner et al, 2014) and can accelerate their cognitive decline (Domenichiello and Ramsden, 2019).
Behaviours that may indicate pain in a person with dementia
| Facial grimace |
Increased or decreased vocalisations |
(adapted from De Vries, 2014)
There is limited understanding of the influence of culture on pain recognition in dementia. However, a multifaceted approach to recognising and assessing pain in individuals with dementia is essential. This should include behavioural observations, input from family and carers, the use of culturally and linguistically adapted pain assessment tools (Pinto et al, 2015; Tegenborg et al, 2023), and the integration of the knowledge, experience and intuition of healthcare providers (Kodagoda et al, 2023). Therefore, it is important to consider approaches to both recognition of pain and its assessment in people with dementia with communication problems and to undertake an appropriate assessment (Table 1).
| Items* | 0 | 1 | 2 | Score |
|---|---|---|---|---|
| Breathing independent of vocalisation | Normal | Occasional laboured breathing; short periods of hyperventilation | Noisy laboured breathing; long periods of hyperventilation; Cheyne−Stokes respiration | |
| Negative vocalisation | None | Occasional moan or groan; low-level speech with a negative or disapproving quality | Repeated troubled calling out; loud moaning or groaning; crying | |
| Facial expression | Smiling or inexpressive | Sad; frightened; frown | Facial grimacing | |
| Body language | Relaxed | Tense; distressed pacing; | Rigid; fist clenched; knees pulled away; pulling or pushing away; striking out | |
| Consolability | No need to console | Distracted or reassured by voice or touch | Unable to console, distract or reassure | |
| Total** | ||||
Note: Total scores range from 0 to 10 (based on a scale of 0 to 2 for five items), with a higher score indicating more severe pain (0=no pain; 10=severe pain)
Assessing pain
Nurses play a significant role in assessing pain (Sonneborn and Williams, 2020). Despite this, there is a reported lack of knowledge regarding pain assessment in older patients (Furjanic et al, 2016). The assessment of pain in people with dementia is particularly challenging when verbal communication declines and self-reporting of pain is no longer reliable (Lundin and Godskesen, 2021). It has negative implications for individuals with dementia in terms of recognising and assessing pain, and effectively managing it (Mackintosh-Franklin, 2020).
Measures and tools to support pain assessment in dementia
Some patients, even those with advanced dementia, may still be able to self-report pain when asked (Sampson and Dening, 2020). It is best to start with this approach. However, the use of an observational pain assessment tool is advocated for most patients (NICE, 2018). The UK guidelines for the assessment of pain in older people (Schofield, 2018) make recommendations on the use of several validated pain assessment tools in people with dementia. These include PAINAD (Warden et al, 2003) (Table 1), Abbey pain scale (Abbey et al, 2004) and Doloplus-2 (Rostad et al, 2017).
Many of these tools are now validated in other languages and cultures. However, researchers suggest that there is no single reliable pain assessment tool (Litchner et al, 2014; Closs et al, 2016) with conflicting reports on their ease of use in practice and variances in the training and guidance required to implement the tools in clinical practice, with application and scoring considered to be potentially subjective (NHS, 2020).
Assessing pain in individuals with advanced dementia can be complex and often requires corroborative information, including historical details about the person's previous pain management strategies. This information is frequently obtained from family caregivers, who can provide valuable insights (Closs et al, 2016). It is essential to use various sources of information for effective pain assessment in people with advanced dementia. This should include medical history of comorbidities, a suitable observational assessment of pain at both rest and movement and corroborative information from someone who knows the person well (Sampson and Dening, 2020; Felton et al, 2021).
Knowing the person
Knowing the person with dementia well (or having an assessment informed by someone who knows them well) is essential for recognising and assessing pain, and effective pain management (Felton et al, 2021; Malones et al, 2021). Family carers can also help with pain identification, given their knowledge of the patient, their life history and any cultural nuances (Lundin and Godskesen 2021; Kodagoda et al, 2023). Research shows that both professional and family caregivers can effectively use pain assessment processes and tools to identify and measure pain in a person with dementia (Ammaturo et al, 2017) and lead to improved pain support for people with dementia (Pu et al, 2023; Smith et al, 2023). Similarly, education about pain in dementia, auditing of pain assessments and related documentation have led to increased patient comfort (Grommi et al, 2023).
Managing pain
Once pain is detected (or even suspected), effective management is essential. Managing pain in people with dementia often requires a multi-faceted approach, one that involves the input of other health and social care professionals. There are two approaches to pain management that can each be considered alone or in conjunction with each other: pharmacological and nonpharmacological interventions.
Pharmacological interventions
Pharmacological interventions are frequently used to assist with pain management (Faculty of Pain Medicine of the Royal College of Anaesthetists, 2021), and contribute to improving the quality of life for people living with pain (Alorfi, 2023). While there are a variety of medications available (Table 2), it is important to achieve a balance between optimising pain relief and managing side effects. Generally, patients should be involved in decision making regarding the pharmacological management of pain (Faculty of Pain Medicine of the Royal College of Anaesthetists, 2023). However, this may be difficult to achieve when a person with dementia is unable to communicate.
| Class | Examples | Role in pain |
|---|---|---|
| Non-opioid analgesics | Aspirin, ibuprofen, naproxen | Inhibit production of prostaglandins, which are responsible for pain and inflammation |
| Opioid analgesics | Morphine, oxycodone, hydrocodone, fentanyl, and codeine | Inhibition of opioid receptor |
| Antidepressants | SSRIs such as paroxetine and fluoxetine TCAs such as amitriptyline and nortriptyline | Adjuvants to pain medications |
| Benzodiazepines | Diazepam | Inhibit GABA neurotransmitter in the brain |
| Anticonvulsants | Gabapentin and pregabalin | Reduction of the release of glutamate and sensory neuropeptides |
| Corticosteroids | Prednisone and dexamethasone | Anti-inflammatory action |
Note: SSRIs= selective serotonin reuptake inhibitors; TCAs=tricyclic antidepressants; GABA=Gamma aminobutyric acid
For dementia patients who lack the capacity to make decisions about their care and treatment, the principles of the Mental Capacity Act (2005) and the best interest process should be followed. NICE (2021b) offers guidelines on the management of chronic pain and the Faculty of Pain Medicine of the Royal College of Anaesthetists (2023) suggests that the choice of treatment should be the one with the most positive outcome. However, it is recognised that while analgesia may be essential for pain management in people with dementia, non-pharmacological interventions also hold merit (Achterberg et al, 2020).
Non-pharmacological interventions
Depending on the cause of the pain, non-pharmacological interventions may be helpful, particularly with musculoskeletal aetiology (Sampson and Dening, 2020). This may include repositioning, provision of optimal seating or specialist beds, physiotherapy, massage, heat, or cold (Sampson and Dening, 2020). Other non-pharmacological interventions may include, distraction, exercise, relaxation and environmental modifications (Achterberg et al, 2020). The presence of family carers has also proven useful in reducing pain in dementia patients (Anderson et al, 2018).
Nurses may have to get to know the patient as well as possible to implement some of these non-pharmacological interventions. Kitwood (1997) identified that relationships are key for people with dementia and that these relationships, along with life experiences, make the patients unique individuals. Gathering a person's life history through assessments and care planning documentation—incorporating culture-specific factors (Mountford and Dening, 2019)—is an effective strategy for implementing person-centred care (Ajibade, 2021). Implementing personalised care plans also enables family carers to be involved in the patient's care and supports maintaining effective and caring relationships (Brodaty and Donkin, 2009; Soklaridis et al, 2016), while minimising distress caused by pain (Elliot et al, 2014).
Case studies in nurse education
The authors use a hypothetical case study (Box 2) to emphasise the recognition, assessment and management of pain in a person with advanced dementia in a community setting. Case studies can be educational and informative and offer a simulation of practice examples where clinicians can identify themselves in such situations or recall similar scenarios that they witnessed or experienced (Seshan et al, 2021). Reviewing case studies offers ideas on how to improve clinical practice and patient outcomes. It can also generate a deeper and multi-faceted understanding of complexities encountered in a real-life clinical context.
Case study
George is a 76-year-old man who lives at home with Rita, his wife of 50 years. George was diagnosed with vascular dementia several years ago, and now experiences expressive dysphasia (in George this presents as no longer being able to write, difficulty in speaking fluently and solving word-finding problems). He can only say ‘yes’ and ‘no’ (not in a reliable way, sometimes saying no while meaning yes and vice versa). George has several comorbidities including high blood pressure, osteoarthritis, diabetes and chronic backache. The district nurse visits regularly to dress a chronic wound on his left shin, which is difficult to heal because of impaired circulation caused by diabetes. Previously, George worked as a builder and enjoyed listening to the radio and singing along to 70s songs during his work day. He also used to enjoy going on holidays and travelled to various countries, Malta being his favourite.
During one visit, the district nurse notices that George seems distressed; he is usually welcoming of her visits and smiles as she talks to him and dresses his wound. Over the last two weeks, George has become increasingly angry and resistive to her intervention and today he becomes physically aggressive, batting her hand away when she approaches his legs and saying ‘yes, yes, yes’, which confuses her. Rita says that he has also become increasingly difficult when his carers try to dress him and put his socks and shoes on. He is also refusing to take his medications, one of which is an analgesic for his osteoarthritis.
Discussion
George is experiencing severe levels of pain when his care workers are supporting him with personal care and when the district nurse attempts to dress his wounds. George is communicating his pain through his behaviour which, in this instance, manifests as physical aggression towards the nurse (Schofield, 2018). This is probably not an uncommon situation, especially where care interventions have the potential to cause pain. While George seems to refuse care, he is actually anticipating pain and expressing distress; this is known as the nocebo effect (Armanzo and Palermo, 2019). Nocebo is the psychobiological effect caused by the negative psychosocial context that accompanies a therapy (in this case George's anticipation of a dressing change). It is a direct consequence of negative expectations by the patient, so it is important to consider how staff can continue to support George's care needs and assess his pain. George's ability to communicate his needs and his pain has been affected by his progressive dementia. As discussed, a person with dementia may experience expressive dysphasia; one effect of this is where an individual may use the same word in a variety of contexts (Suárez-González et al, 2021). In George's case, this manifests itself in using the words ‘yes’ and ‘no’ irrespective of the question being asked, raising doubts regarding his ability to self-report pain.
The district nurse suspects that George's leg wound has become infected and painful, which is why he is guarding and protecting his leg from being touched by others. His lack of capacity and understanding means that he may not appreciate the need for his wound to be cleansed and the dressing changed (Mental Capacity Act, 2005). The nurse decides to use an observation pain-assessment tool to start her pain assessment and chooses PAINAD (Table 1) (Warden et al, 2003). This tool is quick and easy to use and is validated for people with dementia, both mobile and immobile. Another advantage of PAINAD is that it can be used by care workers and his wife because no training is required to use it (Warden et al, 2003). The PAINAD tool helps the nurse to consider how George is using non-verbal communication and behaviours to express his pain and considers his presentation in the following areas: breathing, negative vocalisation, changes to facial expressions and body language, and ability to be consoled. This gives the nurse a total score that indicates either mild, moderate or severe pain. It will enable a baseline assessment and will be useful when reviewing his pain levels and evaluating the efficacy of non-pharmacological interventions.
It is important to review the patient's prescription record to check that they have received their regular analgesic, if prescribed. This enquiry reveals that George has been refusing all care interventions, including his regular medications. The nurse offers George some paracetamol, which he agrees to take with a cup of tea after some persuasion. Pre-emptive medication (Ford, 2019) and allowing time for it to take effect may enable George to agree to his wound being dressed. Paracetamol is a relatively safe and effective first-choice analgesic (Achterberg et al, 2020). Since pro re nata medication prescriptions should be avoided in people with dementia because of communication barriers, routine and regular analgesics are recommended (Sampson and Dening, 2020).
The nurse involves Rita in her assessment of George's pain and seeks to corroborate aspects of recent behavioural changes and how this affects his care. Apart from understanding George's past medical history and other comorbidities, it is helpful to also ask Rita about George's usual mode of displaying pain. The people close to the patient are often able to identify any changes in facial expression, or body language that may indicate pain and discomfort (Soklaridis et al, 2016). Finding out about his life history is important to support George in a person-centred way and ensure that his psychological needs, particularly comfort, are met. Documenting his life story could be suggested to George's family to identify psychological and non-pharmacological interventions that could offer comfort at times of pain and distress. For instance, his love of 70s music could serve as a distraction during dressing changes (Lam et al, 2020). Pain management programmes recommend a focus on social activities and leisure as an effective treatment management for pain (Faculty of Pain Medicine of the Royal College of Anaesthetists, 2021).
The use of validation therapy may be effective in managing pain (Feil, 1993). Validation therapy is a method of communicating with dementia patients. It focuses on empathy and listening, especially as their dementia progresses and communication becomes impaired (Feil, 1993). It aims to acknowledge and validate the person's feelings. In George's case, saying ‘I can see you are in pain George. I will not do anything that you don't want me to do,’ enables the person to validate George's expressions of distress. It conveys to him that his non-verbal communication has been heard and taken into account.
Conclusions
Assessing pain in people with advanced dementia is not straightforward and at times it can be complex and challenging for clinicians. People with dementia develop communication difficulties as the condition progresses. This is even more prevalent in people with advanced dementia. Such communication difficulties can have an impact on how the person expresses their needs, often exhibited by a change in their behaviours. This leads to the risk of their diagnosis of dementia overshadowing any underlying physical cause, especially if caused by pain, and can lead to poor assessment and inappropriate management of their pain.
Though there are various observational pain assessment tools to assist clinicians in recognising and measuring pain, these should be used in conjunction with an understanding of the person's medical history and comorbidities, their previous methods of pain management, personal life history and corroboration and involvement of close family carers who know the person well.