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Studies investigating the link between behavior and pain in dementia address chronic rather than acute pain.  As opposed to acute pain, which results from trauma, injury or recent inflammation, chronic pain can be caused by musculoskeletal disease and actual changes in the brain (Gonzalez, 2015).  By definition, chronic pain has a duration longer than 3 months, a specified or unknown cause, and persists beyond normal healing time and/or despite treatment.  Chronic pain can be variable, constant, or intermittent (Teater, 2017). There are four types of chronic pain.  These are an excess of nociceptive (sensory) input due to inflammation, active illness, or direct tissue damage; neuropathic pain caused by nerve damage or dysfunction; chronic pain syndrome in which no known body lesion is related to the pain experienced and which does not respond adequately to treatment (ex. fibromyalgia, IBS); and mixed pain syndrome, which is a result of direct tissue invasion, nerve damage, or treatment side effects (Hughes et al, 2012).  Chronic pain in VaD (Vascular Dementia) is most often neuropathic pain, also referred to as central sensitivity.  Pain in AD (Alzheimer’s Disease) is complex: patients may suffer from neuropathic and nociceptive pain simultaneously.  Regardless of the type, pain in dementia affects the entire patient - physically, emotionally, socially, and spiritually.  This is referred to as total pain per the National Hospice and Palliative Care Organization Clinical Practice Guidelines (2018). 

 

Non-drug treatments recommended in pain research involve activities and interventions that can prove beneficial for most BPSD attributed to pain.  First, gentle exercise to improve and maintain muscle strength and flexibility cannot be overestimated.  Frequent change of position can help to relieve pressure, as can adding cushions and the use of heating devices or cold packs on affected areas (Colino, 2018).  Staying social is particularly important for well-being of the patient and can reduce reported pain.  To help the patient avoid focusing on pain, provide pleasant activities, arts and crafts, or music as a distraction.  Attempt to make the environment more soothing or calming.  Pets can help, as can meditation if the patient is capable (Colino, 2018 and www.dailycaring June 17, 2019).

 

One of the most valuable nondrug pain treatment studies involved the finding that physical touch can lower pain levels, especially between partners.  This benefit was more pronounced than when a stranger provided touch, a partner was present but did not touch the patient, or the patient experienced pain alone.  It is thought that the loved one’s touch conveyed empathy:  the higher empathy the partner felt, the lower the patient’s pain rating.  The partners even gave similar pain ratings (Goldstein et al, 2016).  Holding hands, a light massage, a kiss, or a simple light touch could all be beneficial to the partner-dementia client relationship and result in decreased pain. 

 

Specific BPSD and their association with pain in dementia are not clear.  Part of the reason for this is that it can be difficult to distinguish which symptoms are manifesting pain and which are a result of disease progression.   However, patterns are gradually emerging in the research.  One of the clearest –and strongest - behavioral associations with pain is aggression.  In fact, the severity of pain during movement and at rest is associated with increasing frequency of aggression (Sampson et al, 2015). (In this study, aggression included verbal outbursts, unaccustomed use of abusive or foul language, and physical threats or threatening behavior like raising a fist.)  When aggression is present with pain, activity disturbances and sleep disruption may also occur (Sampson et al, 2014).

 

Research is mixed about anxiety and its relationship to pain in dementia.  Some studies indicate a strong correlation between the two (Sampson et al, 2014) while others show that although the two symptoms may occur together, anxiety does not improve as a result of treatment for pain (Husebo et al, 2014). Inconsistencies in the literature also exist for agitation (Guerriero et al, 2016).  Some studies show a decrease in agitation, restlessness, and pacing after a trial of analgesics for pain (Achterberg and Lautenbacher, 2017), but others show no association between pain and agitation (Sampson et al, 2015).   One large RCT (randomized controlled trial) investigating the use of opioids in a stepped treatment for pain management showed a decrease in verbal agitated behaviors including repeated questions and sentences, complaining, cursing, and negativism.  Improvement was observed after 4 weeks (Shega et al, 2004).  Some authors have indicated that agitation may not be related to pain because medication does not seem to reduce its incidence or frequency (Husebo et al, 2016).   Part of the discrepancy in results may be due to widely diverse definitions of what behaviors indicate agitation and aggression.

 

Depression improves with treatment for pain (Husebo et al, 2014).  One study concluded pain and mood symptoms, including depression, improved with treatment over 8 weeks with a combination of powerful drugs including extended-release morphine, pregabalin and Tylenol.  Another study using low dose paracetamol (Tylenol) did not decrease agitation, reduce the need for psychotropic meds, nor “improve emotional well-being “(Chibnall et al, 2005).

 

Pain is negatively associated with wandering (Ahn and Horgas, 2013).  However, some studies show a decrease in restlessness, pacing, and agitation after a trial with analgesics (Husebo, Ballard et al, 2014).    Treatment of pain does not result in improvement in psychotic symptoms such as delirium and hallucinations (Guerriero et al, 2016).

 

Inconsistent findings from these studies may be attributed to inadequate dosing, limited duration of treatment, discrepancies in definition of BPSD, difficulties communicating pain, and/or assessment issues.  It is imperative that randomized controlled trials continue to be conducted to decipher the relationship between pain and BPSD in dementia. 

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Sources:                                                                                                                                                                                                                    

Achterberg W, Lautenbacher S.  Editorial: Pain in dementia:  A distressing combination of several factors.  Current Alzheimer Research, 2017:14(5):468-470. 

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Ahn H, Horgas A.  The relationship between pain and disruptive behaviors in nursing home resident with dementia.  BMC Geriart, 2013;13:14.

 

Chibnall J, Tait R, Harman B, Luebbert R.  Effect of acetaminophen on behavior, well-being, and psychotropic medication use in nursing home residents with moderate-to-severe dementia.  J Am Geriatr Soc, 2005;53:1921-9. 

 

Colino S.  The long reach of grief.  Brain and Life, 2019; April/May:19-27.

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Colino S.  Tuning out pain.  Brain and Life, 2018; Aug/Sep:22-25 and Untreated pain in dementia:  Signs, causes, and treatments, June 17, 2019.  Retrieved June 26, 2019 from http://dailycaring.com. 

 

Goldstein P, Shamay-Tsoory S, Yellinek S, Weissman-Fogel I.  Empathy predicts an experimental pain reduction during touch.  Journal of Pain, 2016;17(10):1049-1057.

 

Gonzalez LCA.  The neurologist facing pain in dementia.  Neuralgia, 2015;30:574-585.

 

Guerriero F, Sgarlata C, Maurizi N, Francis M, Rollone M, Carbone M, Rondanelli M, Perna S, Ricevuti G.  Pain management in dementia:  so far, not so good.  Journal of Gerontology-Geriatrics, 2016;64:31-39.

 

Hughes L, Mthembu M, Adams L.  Managing chronic pain in patients with dementia.  GM Journal, 2012;July/August.

 

Husebo B, Achterberg W, Flo E.  Identifying and managing pain in people with Alzheimer’s disease and other types of dementia:  A systematic review.  CNS Drugs, 2016;30:481-497.

 

Husebo B, Ballard C, Fritze F, Sandvik R, Aarsland D.  Efficacy of pain treatment on mood syndrome in patients with dementia:  a randomised clinical trial.  Int J Geriatr Psychiatry, 2014;29:828-36.

 

NHPCO Clinical Practice Guidelines for Quality Palliative Care, 4th Edition (2018) from the Center to Advance Palliative Care, 2019.

 

Sampson E, White N, Leurent B, Scott S, Lord K, Round J, Jones L.  Behavioural and psychiatric symptoms of people with dementia admitted to the acute hospital:  prospective cohort study.  Br J Psychiatry, 2014;205:189-196.

 

Sampson E, White N, Lord K, Leurent B, Vickerstaff V, Scott S, Jones L: Pain, agitation, and behavioral problems in people with dementia admitted to general hospital wards: a longitudinal cohort study.  Pain, 2015 Apr 156(4):675-83.

 

Shega  J, Hougham G, Stocking C, Cox-Haley D, Sachs G.  Factors associated with self and caregiver report of pain among community-dwelling persons with dementia.  J Palliat Med, 2005;8:567-75.

 

Teater M. “Behavioral Treatment of Chronic Pain”.  PESI, San Antonio, Texas, August 7, 2017.