Pain, ageing and dementia: the crisis is looming, but are we ready?
Pain in older people, and particularly for those people with
dementia, is an underrecognised and undertreated problem of growing
magnitude. Occupational therapists, although well positioned with a
range of skills and resources to help older people with pain and their
caregivers, must first become educated about the issues of pain
assessment and management for this unique population. Despite the fact
that pain is a pervasive symptom of many occupational therapy clients,
the occupational therapy educational curricula and professional
literature fail to alert therapists to the urgent need for research and
guideline development in this rapidly expanding practice area.
Key words: Pain, older people, dementia.
(Powers and duties)
Dementia (Care and treatment)
Aged (Care and treatment)
Pain (Care and treatment)
Pain (Forecasts and trends)
|Publication:||Name: British Journal of Occupational Therapy Publisher: College of Occupational Therapists Ltd. Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 College of Occupational Therapists Ltd. ISSN: 0308-0226|
|Issue:||Date: August, 2009 Source Volume: 72 Source Issue: 8|
|Topic:||Event Code: 010 Forecasts, trends, outlooks Computer Subject: Market trend/market analysis|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
The International Society for the Study of Pain (IASP) (http://www.iasppain.org/) identified Pain in Older Persons as its theme for the annual Global Year against Pain awareness campaign in 2006-2007 (IASP et al 2006). It did this because pain is a significant and underreported problem for older people, and particularly for those with Alzheimer's disease and other dementia (Proctor and Hirdes 2001).
Globally, the population is ageing and it is predicted that by 2050, 36% of the population in most developed countries will be over the age of 65 years (US Census Bureau 2007). Not only are people living longer, but they also experience multiple chronic illnesses in their later years. Many of these conditions have enduring pain as a symptom. It has been estimated that 25% of men and 28% of women over the age of 65 years experience chronic pain. Many of these older adults report both pain in multiple sites and a consequent overall lose of function (Jones and Macfarlane 2005).
Coupling this level of pain and functional incapacity with the rising incidence of Alzheimer's disease and dementia, significant health care and disease management implications can be seen. When Alzheimer's disease occurs as a comorbid diagnosis, chronic and enduring painful conditions (such as arthritis and diabetic neuropathy) can be neglected as the individual loses the ability to communicate his or her pain and physical suffering. Consequently, people with dementia are at an even higher risk of underdiagnosis and mismanagement (Shega et al 2007, Brown, in press). As people with dementia gradually lose their ability to communicate, pain is often expressed through behaviours and vocalisations that are unexpected and difficult to interpret. Rocking, crying out, physical withdrawal and aggression are all cited in the literature as possible expressions of pain that are easily misinterpreted, dismissed as part of the process of dementia and /or go untreated by stressed family members and busy health care staff (Hadjistavropoulos 2005, Shega et al 2007).
Diagnosis and management
Pain diagnosis and management for people with dementia is a complex task. Recent research demonstrates that the effective identification of pain in people with dementia requires standardised observational assessment tools in addition to the usual practice of relying on pain self-report and verbal assessment scales. These observational tools guide the evaluator in attending to unexpected behaviours and changes in the person with dementia (Herr et al 2006, Zwakhalen et al 2006).
Observational assessments, however, require an ongoing knowledge of the individual and are time-intensive (Krulewitch et al 2000). Family members are often best situated to fill this assessment role and have proven able to determine accurately other types of common health problems in nonverbal relatives with dementias (Port 2006). This type of caregiver involvement has the added benefit of addressing caregivers' feelings of powerlessness and frustration about service provision for their family member (Haesler et al 2006, Reid et al 2007). In some studies, an enhanced assessment role for family members has affected staff-family relationships positively and been shown to contribute to the wellbeing of long-term care residents (Looman et al 2002, Haesler et al 2006). Research demonstrates that increasing caregiver knowledge improves coping skills and decreases stress (Schulz and Martire 2004). Although the long-term sustainability of this improved coping is not a consistent finding, this is a promising area (Chambers et al 2004).
Communication is a significant issue in all aspects of continuing care (Looman et al 2002, Tornatore and Grant 2004). Families may fear that negative comments to health care staff will bring reprisal on their loved ones. Care staff are concerned that family complaints can have legal and employment-related consequences. The environment is often fast-paced and non-conducive to communication. Often stakeholders bring expectations, past experiences and sociocultural beliefs to the interaction, which can present significant barriers to clear and useful exchanges that result in improved care for the resident (Janevic and Connell 2001, Haesler et al 2006). Communication, in summary, is both fraught with problems and critical to success, a juggling act that most occupational therapists deal with on a daily basis.
What does occupational therapy offer in pain intervention for people with dementia?
Although occupational therapists are well entrenched in multidisciplinary pain treatment teams for adults and children, very few people with dementia are referred to these specialised resources (Katz et al 2005). Occupational therapists working with older people are likely to encounter and provide interventions to remediate functional problems secondary to pain on a daily basis. Occupational therapists splint, they position and they teach task adaptation, pacing and relaxation techniques (Strong 2002). However, they also have the skills to address the wider psychosocial issues, such as isolation, occupational deprivation, loss of social capital and self-efficacy.
As mentioned above, it is not only in the area of communication that occupational therapists can make a significant contribution to interventions for pain in older people with dementia. For example, the ability to apply a systems perspective, for example the Model of Human Occupation (Kielhofner 2008), across all levels of occupational performance positions occupational therapists to see the big picture. Working with an older person with dementia, they have the skills to recognise that biomechanical wheelchair positioning problems result in more than a painful skin pressure area. That pressure area leads to lost mobility. Lost mobility creates isolation and potentiates depression. Depression coupled with pain from the pressure area can manifest in withdrawal, loss of appetite and repeated vocalisations or other negative behaviours.
Negative behaviours, in turn, are troubling for families and can contribute to less frequent visits. A negative cycle of losses and ineffective communication attempts is established. New losses now compound the consequences of the still unrecognised and untreated pain. Occupational therapists can use their occupational performance analysis skills to intervene both at the individual and, because of their multidisciplinary ethos, at the organisational level.
Is occupational therapy prepared?
The issues of underassessment and the need for an approach to practice that is multifaceted should resonate for occupational therapists. They deal on a daily basis with the challenges presented to people ageing with chronic painful conditions and those progressing through dementia. As part of client-centred practice, occupational therapists recognise the value of family involvement and the importance of health literacy knowledge and the tools for self-management required by individuals and their families. They also strongly appreciate the embedded nature of occupational performance and understand that decreased ability in one area will have functional consequences in another.
On looking at the occupational therapy literature, however, pain in older people has been given very scant attention. For example, a CINAHL search carried out on 9 August 2008 for journal articles with 'occupational therapy' in the title and the word 'pain' in the abstract (no date limits) retrieved 131 hits. When the word 'elderly' was added to search across all text in the previously retrieved citations, there were then only four hits. Substituting any of the words 'seniors', 'older persons', 'geriatrics' or 'dementia' resulted in no hits (except for one on phototherapy for leg ulcers). It is possible that a more systematic and rigorous search of all possible databases and using alternative combinations of words and phrases would have yielded some additional hits. However, CINAHL is a commonly accessed database for clinical occupational therapists and the findings serve to illustrate a shortfall in the pain and ageing research availability.
There does not appear to be an evidence base within the profession to address pain in those people ageing with dementia. Correspondingly, past reviews of the amount of educational content in occupational therapy curricula related to pain of any sort (not specifically to issues of older people or those with dementias) have highlighted an overall lack in most programmes (Unruh 1995, Rochman and Herbert 1999). Indeed, a 2008 study funded by the Canadian Pain Society revealed that, in Canada, pre-registration veterinary students receive more education about pain (an average of 87 hours) than any other health care provider except for anaesthetists. Unfortunately, only three of the six Canadian occupational therapy programmes approached participated. Occupational therapy students in those programmes received an average of 28 hours (standard deviation of 25 hours), with one programme reporting as low as 3 hours of pain awareness education embedded within other course content (Watt-Watson et al 2008). These types of curriculum content studies would be of benefit in other countries and occupational therapists may be able to identify patterns of best practice and /or need that can then be addressed at the level of policy and educational standards.
What do occupational therapists need to do?
Education about what matters
Occupational therapists have a responsibility to educate themselves about what matters. The World Health Organisation (2002) has been emphatic that what matters in the 21st century is chronic disease management and control:
Pain is often a serious problem for people with chronic conditions and the likelihood of occupational therapists' clients experiencing enduring pain will only increase with age and escalating comorbidity. If occupational therapists are to meet the challenge, they must have the courage to look at their current practices and education. They must also have the ambition to move the profession forward in this emerging high need area. As a profession with self-regulation, occupational therapy has the opportunity to change its educational curriculum and can turn to Core curriculum for professional education in pain (IASP 2005) for evidence-based guidance.
Occupational therapists can also assume the responsibility for educating themselves post-registration. IASP, a multidisciplinary organisation with a strong education and research mandate, has over 7,000 members in 108 countries. There are 70 chapters around the world, most open to occupational therapy members. Of those more than 7,000 members, only 25 are occupational therapists (3 in the United Kingdom). In the 2007 Annual Report of the British Pain Society (2007), occupational therapists were included in the group of 25 disciplines, who in total constituted less than 17% of the total membership. In Canada, it appears that less than 20 occupational therapists belong to the Canadian Pain Society out of a membership of over 650 (personal communication, G Smith, Membership Secretary, CPS, 2008). Being members of these types of organisation is important not just for continuing education. It is also important that therapists bring the perspective of occupation to policy makers and other care providers as work to improve the assessment and management of pain in older people gains momentum.
Guidelines for the care of older people with pain exist, or are in development, in many countries. For example, in the United Kingdom guidelines for the assessment of pain in older people were generated in 2007 (Royal College of Physicians 2007) and in Australia by the Australian Pain Society (2005). These guidelines were written by physicians, nurses, psychologists and physiotherapists; occupational therapists did not appear to participate. In the British guidelines, occupational therapy is not mentioned. In the Australian guidelines, occupational therapists are mentioned only briefly as professionals who provide splinting and some forms of musculoskeletal examination. Nevertheless, the evidence highlights that it is critical to apply a biopsychosocial framework to addressing the complexity of enduring pain in older people and increasingly so in those with comorbid dementia. This philosophy of practice speaks strongly to occupational therapists but they have not brought their voice to the table.
Occupational therapists need to have the courage to become involved in organisations like IASP, the British Pain Society and the special interests groups within their professional bodies. The National Occupational Therapy Pain Association (NOTPA) in the United Kingdom is one such special interest group. These organisations are invaluable to the profession's ability to meet what is becoming a crisis in health care. As health care professionals, occupational therapists will benefit from the knowledge exchange opportunities and evidence-based resources they provide. As a profession, occupational therapy needs to share its unique ethos of health and occupation, as it relates to pain, with other professions and policy makers. These organisations are setting the direction of research and it is important that occupational therapists influence priority setting to include issues of occupation and the multiple complex interactions between the range of performance components, pain and function. To neglect this is to risk a continued research agenda that is unbalanced in favour of biosciences to the exclusion of occupation and quality of life issues.
Chronic pain in older people, and particularly those people with dementia who are unable to self-report reliably, is a critical issue. Occupational therapists have both the opportunity and the responsibility to access and contribute to the organisations. This will help to educate occupational therapists and to provide access to policy makers so that they can contribute their unique occupation-based skills in assessment and management towards reducing unnecessary suffering in this growing population of people. In the author's opinion, occupational therapists already have many of the needed tools and the opportunities to effect system-wide change. Now occupational therapists need to find the courage and the ambition to get on board and get involved.
Submitted: 28 August 2008.
Accepted: 14 May 2009.
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Reference: Brown C (2009) Pain, ageing and dementia: the crisis is looming, but are we ready? British Journal of Occupational Therapy, 72(8), 371-375.
Correspondence to: Dr Cary Brown, Associate Professor, Department of Occupational Therapy, 2-64 Corbett Hall, University of Alberta, Edmonton, Alberta, Canada T6E 2G4. Email: email@example.com
The failure to use available knowledge about chronic disease prevention and control needlessly endangers future generations ... taking up the challenge requires a certain amount of courage and ambition (p31).
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