2017 Isabel Richard Student Paper Award Winner (Below Doctoral)
Providing adequate and ethical service to persons with dementia: The greatest ethical issue facing speech-language pathology
By Katharine Davies, recipient of the 2017 Isabel Richard Student Paper Award (Below Doctoral Category)
Please note that this paper appears in its original form, in the language in which it was submitted; we have not edited it for style or grammar.
Persons with dementia (PWD) represent a significantly growing segment of the Canadian and global population. In Canada, there are currently 546,000 individuals living with dementia (Chambers et al., 2016). That amount is expected to increase by 66% before the year 2031 (Chambers et al., 2016). Worldwide, nearly 46.8 million individuals are living with dementia and this number is predicted to double every 20 years (Prince et al., 2015). The World Health Organization has named dementia as the leading cause of disability and dependency among older adults (Prince et al., 2015).
Dementia is a neurological condition that is progressive in nature. In the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (American Psychiatric Association, 2013), dementia (termed a major or minor neurocognitive disorder) is defined as a “significant cognitive decline from a previous level of performance in one or more cognitive domains” (p. 605). The cognitive decline must interfere with an individuals independence in everyday activities. Within the field of speech-language pathology, it has been suggested that individuals with communication-associated dementia problems are the fastest growing clinical population within the speech language pathologist’s (SLP’s) scope of practice. (Mahendra et al., 2013). This may be an understatement, considering individuals with dementia may coexist with other health conditions that also increase in prevalence with age, such as hearing loss, dysphagia, or other neurological disorders such as Parkinson’s Disease. Communication issues affect PWD due to an impairment to the central executive system, affecting working memory and episodic memory (Watson et al., 2013). Examples of communicative tasks adversely affected by dementia range from responding appropriately to comments to holding in mind the topic of conversation (Watson et al., 2013).
As such, PWD may come across an SLP’s caseload either to treat communication problems related directly to a dementia diagnosis, or to treat communication or swallowing problems related to a comorbid diagnosis. In either case, given the growing nature of the population, providing speech-language pathology services to PWD in Canada faces some ethical considerations. In this paper, three of such considerations are presented. First, PWD are an under-served population by way of speech-language pathology services. Second, PWD are severely under-represented in speech-language pathology research. Third, education surrounding speech-language pathology services for PWD is minimal within both our own profession and other professions.
Consideration 1: denying service to a significant segment of the population
We know that individuals with dementia represent a significant and growing (possibly the fastest growing), clinical population within the SLP scope of practice. We do not know how many of these individuals are receiving SLP services. A survey by Hopper et al. (2007) attempted to shed light on the nature of SLP service delivery for individuals with dementia in the Canadian context. The questionnaire-based survey was sent to 514 SLPs across Canada and 304 surveys were returned. The surveys represent SLPs in all provinces and the Yukon, with the majority of respondents working in Ontario, Alberta, and British Columbia. The survey found that 60% of respondents agreed that some individuals with dementia may benefit from SLP services, but that caseload demands prevent providing services. Moreover, 76.3% of respondents identified the following as one of the a top barriers to services: other patients with more acute concerns have priority. This suggests that although most SLPs agree that our services may benefit people with dementia, SLPs are unable to provide services due to other more acute conditions, such as dysphagia, receiving priority.
It has been six years since Hooper et al. (2007) conducted their survey and there is little to suggest that service provision for individuals with dementia has changed in Canada. In fact, in the past six years, the amount of people living with dementia has only increased. A need for SLP services for a significant segment of the Canadian population has been acknowledged. However, so long as dementia services remain as a low priority and funding concerns are unaddressed, at least 546,000 individuals in Canada will continue to be underserved by SLPs.
Consideration 2: providing evidence-based services
The World Alzheimer Report (Prince et al., 2015) has identified a dearth of research on therapeutic interventions for dementia, stating “little is known about, for example, alternatives to antipsychotic treatment, non-drug approaches, or the place of cognitive stimulation… the quest for new drugs must not overshadow improving today’s care and patients’ lives” (p. 77). Of the research that does exist, there is evidence to support a family- centred practice in interventions with people with dementia (Purves & Phinney, 2013). This entails providing counselling to the family regarding communication issues and working with the perspectives and goals of the family. However, as Purves and Phinney (2013) point out, this method is time intensive and there is little evidence that this methodology is routinely implemented. As such, there is a gap between evidence-based practice, and the realities of what can be achieved in practice.
Additionally, recall that PWD often present on a SLPs caseload due to a comorbid condition, such as dysphagia. However, in studies of dysphagia or other health conditions that increase in prevalence with age, individuals with dementia or any cognitive limitation are frequently eliminated from research samples. In order to maximize the internal validity of a study, researchers often opt for a more homogenous population sample, such as omitting those with dementia from studies in dysphagia (Crook & Olswang, 2015). As a consequence, SLPs are left with evidence supporting a particular intervention, but for a different population. For example, refer to a recent meta-analysis by Abdelhamid et al. (2016) which examined the efficacy of dysphagia interventions in individuals with cognitive impairments. The authors were unable to find any evidence or lack of evidence for any dysphagia intervention for individuals with cognitive impairments. Abdelhamid et al. (2016) raised the issue that even when those with dementia are included in dysphagia studies, information regarding the type of dementia diagnosis or stage of dementia are often omitted.
Therefore, the conundrum surrounding evidence-based practice for SLPs working with PWD is twofold. Where evidence exists, it is too costly or time consuming to implement in practice. And, in treating a co- occurring condition, there is little-to-no evidence to support interventions for those with comorbid dementia.
Consideration 3: Receiving the appropriate education and knowledge
The survey by Hopper et al. (2007) identified another concern among SLPs in Canada, that a lack of knowledge regarding how to serve PWD represents a barrier to service. Hopper et al. (2007) explain that several SLPs explicitly commented that more training and education is needed. This concern is echoed by Mahendra et al. (2013) regarding American academic programs, who state that “most ASHA-accredited academic programs in SLP provide minimal coursework and clinical preparation for working with PWD” (p. 6).
In addition to education and training for practicing SLPs, our colleagues from other disciplines could also use additional training. Another one of the top three barriers to service for PWD as identified by Hopper et al. (2007) is lack of referrals from other professionals. The authors and SLPs cited in the publication express concern that other health workers are not aware of what SLPs can offer PWD and therefore do not refer our services. Moreover, an individually receiving a dementia diagnosis are unlikely to know to ask for a referral for SLP services.
Future Considerations
In conclusion, adequate service provision for PWD represent an ethical challenge in the future course of speech- language pathology. First, funding and case-load limitations are leading to the under-servicing of a significantly growing population. Second, there is little research available to SLPs on PWD, making evidence-based practice difficult to implement. Third, education for SLPs on interventions for PWD and education about how SLPs can serve PWD, is lacking. The Speech-Language and Audiology Canada (SAC) Code of Ethics states that the value of professionalism entails “seek[ing] to advance the quality and provision of professional services through advocacy, public education” and to “work collaboratively with members of both their own profession and other professions in the interest of delivering the best quality of care” (p. 2). The SAC Code of Ethics also states that the value of high standards and continuing competency entails “provide[ing] professional services and information supported by current scientific and professional research” (p. 3). To abide by these principles and deliver the best quality of care to PWD, much headway is needed by way of advocacy to raise the awareness of the benefits – or necessity – of speech-language pathology services. Hopefully by raising awareness in this area, funding and research for speech-language pathology services will increase and the needs of Canadians with dementia can be met.
References
Abdelhamid, A., Bunn, D., Copley, M., Cowap, V., Dickinson, A., Gray, L., Howe, A., Killett, A., Lee, J., Li, F., Poland, F., Potter, J., Richardson, K., Smithard, D., Fox, C., & Hooper, L. (2016). Effectiveness of interventions to directly support food and drink intake in people with dementia: Systematic review and meta-analysis. BMC Geriatrics, 16(1), 26-44.
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.).Washington, DC: American Psychiatric Association.
Chambers, L.W., Bancej, C., McDowell, I. (2016). Prevalence and Monetary Costs of Dementia in Canada: Population Health Expert Panel. PDF available from: http://www.alzheimer.ca/~/media/Files/national/Statistics/PrevalenceandCostsofDementia_EN.pdf
Crooke, P. J., & Olswang, L. B. (2015). Practice-based research: another pathway for closing the research- practice gap. Journal of Speech, Language, and Hearing Research, 58(6), 1878-1882.
Hopper, T., Cleary, S., Oddson, B., Donnelly, M. J., & Elgar, S. (2007). Service delivery for older Canadians with dementia: A survey of speech-language pathologists. Canadian Journal of Speech-Language Pathology and Audiology, 31(3), 114-126.
Mahendra, N., Fremont, K., & Dionne, E. (2013). Teaching future providers about dementia: The impact of service learning. Seminars in Speech and Language, 34(1), 5-17.
Prince, M., Wilmo, A., Guerchet, M., Ali, G-C., Wu, U-T., & Prina, M. (2015). World Alzheimer Report 2015: the global impact of dementia. PDF available from: https://www.alz.co.uk/research/world-report-2015
Purves, B.A., & Phinney, A. (2013). Family voices: A family systems approach to understanding communication in dementia. Canadian Journal of Speech-Language Pathology and Audiology,36(4), 284-300.
Speech-Language and Audiology Canada. (2016). SAC Code of Ethics. PDF available from http://www.sac-oac.ca/sites/default/files/resources/2016_sac_Code_of_Ethics_en.pdf
Taylor, C., Kingma, R.M., Croot, K., & Nickels, L. (2009). Speech pathology services for primary progressive aphasia: Exploring an emerging area of practice. Aphasiology, 23(2), 161-174.
Watson, B., Aizawa, L. D., Savundranayagam, M. Y., & Orange, J.B. (2013). Links among communication, dementia and caregiver burden. Canadian Journal of Speech-Language Pathology and Audiology, 36(4), 276-283
Katharine is currently pursuing her master of science in speech-language pathology at the University of British Columbia, before which she completed a bachelor of arts and a master of arts. Before starting her program, she spent time volunteering with persons with dementia at a long-term care facility. After graduating she hopes to work with persons with dementia and other neurodegenerative diseases, and their families. Katharine lives in Vancouver with her husband and daughter and loves to spend her free time rock climbing and running.
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