Observable discomfort in people with dementia: does it point to pain or another cause?

Jenny T van der Steen, Elizabeth L Sampson and Nele JA Van Den Noortgate explain the background to their longer article published in the May/June edition of the European Journal of Palliative Care.

Jenny van der Steen

Jenny T van der Steen

Pain is common in older people, and probably no less so in people with dementia. However, risk of inadequate treatment is increased if they are unable to self-report pain. The practice of systematic observation of possible pain indicators is favoured to help detect pain and indicate intensity; for example, through direct observation or through recall of facial expressions, vocalisation, and changes in activities of daily living (ADL). As many as around 30 such pain tools have been developed. Some other tools observe general discomfort or distress that may or may not indicate pain in people with dementia.

Elizabeth L Sampson

Elizabeth L Sampson

We are members of the Palliative Care Working Group of a European Union COST Action (Pain Assessment in Patients with Impaired Cognition, especially Dementia), that is geared towards developing a pain toolkit. As such, we wondered if, and how, these tools differed. We therefore reviewed in detail eight exemplary pain and discomfort tools. This required thorough and in-depth reasoning and enjoyable, complicated discussions. Despite great variation among the tools, we found some differences between the items of pain and discomfort tools. For example, discomfort tools had more subjective items. However, only a few items were specific to either type of tool, such as ‘guarding’ for pain tools and ‘serenity’ for discomfort tools.

Nele JA Van Den Noortgate

Nele JA Van Den Noortgate

Next, via our networks, we had an interesting and intense debate regarding the pros and cons of two distinct approaches. The first is direct observation of standardised items and is used to observe pain with the PAINAD (Pain Assessment in Advanced Dementia Scale) (Prof. Ladislav Volicer and colleagues). The second builds a baseline of individualised behaviour when patients are content or distressed. A later assessment is compared with the baseline. This is used in the DisDAT (Disability Distress Assessment Tool) (Dr Claud Regnard and colleagues). The PAINAD developers assume that pain is expressed by a limited number of signs observable in two minutes. The DisDAT team, by contrast, believes that expression of distress is highly individual and stable over time, and that behaviour cannot indicate a specific cause.

We extended the debate with PhD students and teachers attending the COST spring school in Ghent in March. How might a tool to assess non-pain distress look? Should we drop the guarding item from pain tools if guarding is uncommon? How representative is the case of a lady whose individual pain indicator was fiddling with her left trouser leg?

There is little research to help identify the best approach, or that compares pain and discomfort tools head-to-head. It might depend on the situation such as availability of a familiar caregiver, time, and a stable condition. Moreover, in practice, assessment is not enough: observations, whether with pain or discomfort tools, should lead to finding a cause. Still, we feel that even imperfect approaches and tools may help recognise behavioural cues as possible indicators of pain or discomfort – an individualised approach and systematic assessment remain at the heart of palliative care.

European Cooperation in Science and Technology (COST). Action TD1005. Pain Assessment in Patients with Impaired Cognition, especially Dementia

van der Steen JT, Sampson EL, Vandervoort A, Lord K, Pautex S, Shvartzman P, Van den Block L, Sacchi V, Van Den Noortgate NJA. Measuring pain and comfort in dementia at the end of life. European Journal of Palliative Care 2013, page 85, abstract P1-091. Poster presentation. A full paper is under review.

EJPC May coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Detecting pain or distress in people with dementia: anappraisal of two strategies’ by JT van der Steen, C Regnard, L Volicer, NJA Van Den Noortgate, EL Sampson, published in the May/June 2015 issue of the European Journal of Palliative Care (vol. 22.3).  If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online. 

The publishers are offering 50% discount on subscriptions until 31 May 2015. Take advantage of this exclusive offer and save on your subscription to the European Journal of Palliative Care (EJPC). In order to redeem this exclusive offer please enter discount code EJPC50 (for personal subscriptions) or EJPC50I (for institutional subscriptions) online or email one of the team who will set up your subscription for you.

Links and resources

  • van der Steen JT et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197-209. Available to download as a PDF from the EAPC website. 
  • PAINAD and a description of the items Iowa Geriatric Education Center.
  • DisDAT.

More about the authors
Jenny van der Steen is an epidemiologist and associate professor at the VU University Medical Center in Amsterdam, the Netherlands; her research focuses on palliative care for older people, mainly dementia. Elizabeth Sampson is a clinical senior lecturer in the Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London and a consultant in Liaison Psychiatry at North Middlesex University Hospital Trust, UK. Nele JA Van Den Noortgate is Head of the Geriatric Department at the Ghent University Hospital and a senior lecturer in Geriatrics and Gerontology at Ghent University, Belgium.

Are you coming to Copenhagen?
See you at the 14th World Congress of the European Association for Palliative Care – Copenhagen, Denmark, 8-10 May 2015. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015 

Jenny van der Steen, Elizabeth Sampson and Ladislav Volicer will be presenting their work at the Congress in the Parallel Session: Controversies around palliative care for people with dementia: Building bridges between palliativists and other specialists at 11h00 on Friday 8 May, Room A3. Download the final programme and the book of abstracts.

This entry was posted in Dementia, EAPC-LINKED JOURNALS, European Journal of Palliative Care, RESEARCH and tagged . Bookmark the permalink.

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