The last 14 years of my career has been a balancing act!

Whilst developing my skills and knowledge to support my professional career in my role as an advanced practitioner physiotherapist in rheumatology, I have also been a main carer firstly of my mum, who passed away last year, and more recently my dad too. This role has been personally the very most challenging of my life, learning about Alzheimer’s and dementia, the social care system in its’ intricacies and the various gradual changes which inevitably occur over the course of the condition and how to navigate them together. Through this time I have sadly observed a number of my patients within my axial spondylarthritis clinics who themselves have developed cognitive decline and dementia. It sparked my thinking about the link between inflammatory diseases and dementia and the challenges those living with these conditions and their families, friends and carers face and we clinicians can face trying to ‘get it right’ for all. It can seem like an impossible battle. My blog this month is not designed to give a comprehensive review of all evidence nor a list of does and don’ts but simply a prompt to consider things perhaps a little differently if you are in the privileged (but challenging) position to be caring or clinically involved with a patient who also suffers with cognitive decline or dementia.

According to latest figures from the Alzheimer’s Society, there are approximately 900 000 people diagnosed with dementia in the UK, with 1 in 20 of these being under the age of 65. The most common form is Alzheimer’s disease, though other forms of dementia exist (frontal-temporal, vascular, dementia with Lewy bodies). The key features in the early to middle phases can include memory loss, difficulty with speech and word finding, difficulty with task completion, concentration, decision making, coordination and balance. It is often associated with histories of anxiety and depression or psychological trauma (Ownby et al. 2006), cardio-vascular disease (Newman et al. 2006), smoking or physical inactivity, all of which are associated with increased risk of inflammatory joint diseases, including axial spondyloarthritis. There is some thought that the links between the inflammatory processes in rheumatic diseases and cardiovascular conditions and those linked with dementia may be related to biological processes which may contribute to amyloid plaques developing within the brain and the subsequent brain changes associated with dementia symptoms.

Jang et al. (2019), conducted a population study which looked at population data from the Korean National Health Insurance System. Using various statistical analysis, they identified there was an increased prevalence of overall dementia in populations of people living with axial spondylarthritis.  So, with this in mind, we are likely to encounter more people in time with a combination of these conditions, it is important we think about how can we help advise our patients to reduced their risks. This generally includes much of what we should already be doing (NICE 2016) such as comprehensive lifestyle advice, smoking cessation, increasing physical activity, anxiety management and psychological health improvements. Other aspects of course may need to be considered also, for example: how do you perform a BASDAI on somebody who doesn’t understand the questions fully to answer them, but is on a biologic?

There are a number of studies which have looked at pain assessment in musculoskeletal disorders and in the elderly with cognitive impairment though many lack robust methodology and this as such lessens their reliability (Lichtner et al 2014). From discussions with my Trust’s Dementia Matron and reviewing of the British Pain Society Guidelines in 2007, there is a suggestion to use a Pain Thermometer in early and moderate level cognitive impairment and the Abbey Pain Score system in moderate to severe impairment. Neither of these are particularly well validated and certainly not so for assessment of rheumatic disease monitoring. The PAINAD has been validated for pain assessment and response to pain management but has the risk of being overly sensitive to psychology stress, often very apparent in people with dementia. Both the PAINAD and Abbey Pain Score tools rely on observation by another of the patient’s vocalisation and facial and body expressions and movements e.g. grimacing or guarding. Frustration can also manifest in facial expression changes which could be overly viewed as pain. These are likely to be seen more in advanced dementia, but we are more likely in years to come to have patients attending our outpatient clinics who have at least moderate dementia and are still living at home with support from partners or family. Do we go off what they say? Our assessment criteria don’t formally consider this in rheumatology so again it lacks validity. As for other criteria, inflammatory markers are often not raised in spondyloarthritic conditions so although they could be a helpful monitoring tool, inflammatory markers in reality often aren’t. An MRI scan to review evidence of active inflammation as a monitoring tool could work, but is this a dementia friendly investigation? Not always, as it is unfamiliar and difficult for some with more advanced impairment to comprehend a need to remain still in a confined space for 45 minutes or more. Is this also an appropriate use of a more expensive and potential anxiety inducing method, ethically or economically?

So, it would appear there is no clear answer in how best to monitor a patient’s response to treatments other than your own clinical judgement and application, where possible, of the Bath indices questions, perhaps with some alternative wording to simplify, prompting with body charts or signalling to describe pain presentation on a person’s own body. The use of pain assessment tools may be beneficial too in order to holistically assess a patient; and a bit of a judgement call. The British Pain Society acknowledge pain assessment of people who lack cognition or suffer with dementia needs to be further assessed and tools further validated and reviewed in real life settings. As the population ages, and dementia and Alzheimer’s disease become set to peek at one million by 2025, and potentially 2 million by 2050 (Alzheimer’s Society 2014), do we need to reassess how we disease monitor in axial spondylarthritis?

Clare

References:

Alzheimer’s society 2014 dementia_uk_update.pdf (alzheimers.org.uk)

Booth MJ, Kobayashi LC, Janevic MR, Clauw D, Piette JD. No increased risk of Alzheimer’s disease among people with immune-mediated inflammatory diseases: findings from a longitudinal cohort study of U.S. older adults. BMC Rheumatol. 2021 Nov 12;5(1):48. doi: 10.1186/s41927-021-00219-x. PMID: 34763722; PMCID: PMC8588609.

Jang HD, Park JS, Kim DW, Han K, Shin BJ, et al. (2019) Relationship between dementia and ankylosing spondylitis: A nationwide, population-based, retrospective longitudinal cohort study. PLOS ONE 14(1): e0210335. https://doi.org/10.1371/journal.pone.0210335

Jordan A, Hughes J, Pakresi M, Hepburn S, O’Brien JT. The utility of PAINAD in assessing pain in a UK population with severe dementia. Int J Geriatr Psychiatry. 2011 Feb;26(2):118-26. PMID: 20652872. https://doi.org/10.1002/gps.2489

Lichtner, V., Dowding, D., Esterhuizen, P. et al. Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools. BMC Geriatr 14, 138 (2014). https://doi.org/10.1186/1471-2318-14-138

Newman, A.B., Fitzpatrick, A.L., Lopez, O., Jackson, S., Lyketsos, C., Jagust, W., Ives, D., DeKosky, S.T. and Kuller, L.H. (2005), Dementia and Alzheimer’s Disease Incidence in Relationship to Cardiovascular Disease in the Cardiovascular Health Study Cohort. Journal of the American Geriatrics Society, 53: 1101-1107. https://doi.org/10.1111/j.1532-5415.2005.53360.x

Nisha Nigil Haroon, J. Michael Paterson, Ping Li, et al. Patients With Ankylosing Spondylitis Have Increased Cardiovascular and Cerebrovascular Mortality: A Population-Based Study. Ann Intern Med.2015;163:409-416. [Epub ahead of print 15 September 2015]. doi:10.7326/M14-2470

Ownby RL, Crocco E, Acevedo A, John V, Loewenstein D. Depression and risk for Alzheimer disease: systematic review, meta-analysis, and metaregression analysis. Arch Gen Psychiatry. 2006 May;63(5):530-8. doi: 10.1001/archpsyc.63.5.530. PMID: 16651510; PMCID: PMC3530614. Depression and risk for Alzheimer disease: systematic review, meta-analysis, and metaregression analysis – PubMed (nih.gov)

Royal College of Physicians 2007 A concise guide to good practice, A series of evidence-based guidelines for clinical management Number 8 ‘The assessment of pain in older people National Guidelines’ untitled (britishpainsociety.org)

Schofield, P 2018 ‘The Assessment of Pain in Older People: UK National Guidelines’, Age and Ageing, Volume 47, Issue suppl_1, March 2018, Pages i1–i22, https://doi.org/10.1093/ageing/afx192

Vitturi, B., Suriano, E., Pereira de Sousa, A., & Torigoe, D. (2020). Cognitive Impairment in Patients with Ankylosing Spondylitis. Canadian Journal of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, 47(2), 219-225. doi:10.1017/cjn.2020.14Cognitive Impairment in Patients with Ankylosing Spondylitis | Canadian Journal of Neurological Sciences | Cambridge Core