Neurodegenerative Disease Dementia

The realisation that dementia care, especially at the end of life, is often inadequate and the recognition of the relevance of a palliative care approach has led to the development of guidelines or expert opinions concerning aspects of palliative care for people with dementia. This guidance tends to represent a synthesis of the latest evidence on particular aspects of care for people dying with or from dementia.28

However, there is recognition that the evidence available is neither necessarily particularly high quality nor sufficient. What follows is a summary of the main aspects of available guidance and some of the evidence supporting the recommendations, but with the caveat that the evidence requires closer critical scrutiny.

A striking feature of the various guidelines and recommendations is that there is a high degree of uniformity. This probably reflects the limited nature of the evidence, but we would suggest it also reflects the shared values that underpin palliative care. Therefore, having considered some issues specifically relevant to palliative care in dementia, we shall (albeit briefly) proceed to highlight a recent ethical framework developed to help thinking around the issues that arise in dementia care. We shall conclude by reflecting on what has, perhaps to a degree, been under-emphasised in debates about palliative care in dementia.

Guidance and Guidelines

We are aware that many organisations have produced helpful local or regional guidelines and we have not attempted to produce a comprehensive overview, especially since many of the guidelines draw from the same sources of evidence. Authoritative documents can be found from, for example, Australia,29 America31,32

Europe,30 and the UK.33,34 North While this is not a systematic review, we

would be surprised (and apologetic) if it transpires that some other set of guidelines might radically change the summary that we offer.

Pain

Pain management for people with dementia is often poor, with pain either not being detected or being inadequately treated.35,36

Indeed, it

Detection of pain is obviously critical and a number of guidelines suggest observational scales should be used.29,30,33

has been stated that “people with dementia often die with inadequate pain control.”12

Pain

management is much the same as in other branches of medicine, where a mixture of non-pharmacological and pharmacological approaches, with the use of the World Health Organization’s (WHO’s) analgesic ladder, are commended.28–30,33,35

It is also recommended that

analgesia needs to be given regularly, not just ‘as required’, and orally if possible. However, other means of giving medication (e.g. transdermal patches) can also be considered.29,30,35,37

Although there is much agreement over the importance of pain and the need for it to be assessed carefully, it is not completely clear how best to achieve this for people who cannot communicate. There is no gold standard. Reviews have not been able to identify any one scale as best and, indeed, their psychometric properties can be criticised.38,39

Moreover, probably as a general rule, observational pain tools have a high false-positive rate for the detection of pain40 because they also detect distress, of which pain is just one manifestation.33,35,41

Hence, a good deal of clinical acumen is still required to assess and treat distress adequately in people with dementia who might have pain. Research into pain management in this population is relatively sparse, and little is understood about

30

A study in the Netherlands showed that antibiotic treatment was withheld in pneumonia only when the patient was frailer, with more severe pneumonia and more severe dementia (23% of cases). Therefore, it looks as if nuanced clinical judgements are being made concerning the likely benefits and harms associated with the use of antibiotics, in a context where they are mostly being used.50

Artificial Nutrition and Hydration

Even in the early stages of dementia poor food intake is common. This may be due to failure to recognise food or dyspraxia, or it may be that the normal physiological drivers of appetite and satiety are lost owing to changes in limbic or hypothalamic function. As the disease progresses, swallowing itself may become compromised51

and hence

the use of artificial nutrition and hydration (ANH) is often mooted. The prevalence of ANH differs according to location and patient characteristics, with up to 40% of patients being tube-fed in some

EUROPEAN NEUROLOGICAL REVIEW

whether pain is experienced in the same way in people with dementia as in normal controls.35,42

Infections and Fevers – The Use of Antibiotics Pneumonia is a common cause of death.5

The question of when to

treat with antibiotics and when not to is complicated, but the literature is thoroughly reviewed by Volicer.31

The National Institute for

Health and Clinical Excellence–Social Care Institute for Excellence (NICE-SCIE) guidelines also present the controversies surrounding the use of antibiotics, particularly the use of parenteral antibiotics.31,33

Antibiotics do not necessarily prolong life,43 study they worsened dementia.44

and at least in one The NICE-SCIE guidelines

recommend that the use of antibiotics needs to be determined by the specific circumstances, but noted evidence that antibiotics can relieve distress.33

Similarly, Alzheimer’s Australia29 and Alzheimer Europe30 recommend

that decisions are made on an individual basis and that the benefits and burdens of therapy must be considered carefully. The Alzheimer Europe report in particular stresses the need for the prevention of infection.30

The parenteral

route can produce more discomfort and it is well recognised that a patient who does not understand the intervention may try to remove cannulas.45

Parenteral antibiotics have been shown not to improve survival or lessen functional decline.46

However, there was a statistically

significant increase in the diagnosis of respiratory tract illnesses as an indication for antimicrobial treatment as residents in one nursing home study approached death: in residents who died, 42.2% received antimicrobials during the last two weeks of life, often via the parenteral route, with implications in terms of the discomfort to the residents and antimicrobial resistance.47

However, pneumonia is not the ‘old man’s friend’ and there may be considerable levels of distress: oral antibiotic use may reduce discomfort levels in patients with dementia who have pneumonia.48

Volicer, while presenting the evidence for the use of antibiotics, notes that they should be given orally.31

It

can also be argued that ethical considerations may mandate the use of treatment for a potentially curable disease unless there is an advance directive to the contrary, i.e. an advance refusal of treatment.49