Communication is a key aspect of day-to-day interactions, expressing opinions, maintaining relationships and making choices. Communication requires expressive and receptive language, planning and judgement skills, and even empathy. Yet people with dementia frequently have difficulties in some if not all of these areas. And the consequences of how the people around those people interact with these difficulties dictates whether a message will be received, an opinion heard or a person will feel valued. Anna Volkmer (@volkmer_anna) and Courtney Shaw (@courtneyjshaw1) describe here their PhD research work in the area of dementia and communication:
Dementia remains one of the biggest expanding caseloads for speech and language therapists (Mahendra & Arkin, 2003). It was in the 80s when Mesulam first recognised the language variant of dementia: primary progressive aphasia (PPA). Since then this has been recognised as three variants with one – logopenic PPA – being recognised only a few years ago (a contentious new development).
The area of communication interventions for people with PPA and other types of dementia remains in its infancy. Cognitive Stimulation Therapy (Spector, Thorgrimsen, Woods et al (2003) is one of the only Cochrane reviewed non-pharmacological interventions for dementia (although not necessarily a speech and language therapy intervention as such it is often delivered by us, and demonstrates positive communication outcome in research).
There is some research demonstrating the effectiveness of naming therapies with people with PPA (Jokel et al, 2014). These types of therapy interventions focus on tasks such as drilling picture names, object description and first and last sound identification tasks. It is known that people with PPA often disengage from these types of therapies due to the frustration of practising words they will inevitably loose (Croot et al, 2009). In clinical practice speech and language therapists are more likely to use communication training for people with PPA and their families than naming therapies (Volkmer, 2016). Yet, there is little research evidence demonstrating the effectiveness of this approach.
Anna’s PhD will be focusing on gathering information on what speech and language therapists are doing across the UK to inform the development of a communication training program for people with PPA and their families. Her NIHR funded doctoral research fellowship will enable her to refine and pilot the program across three NHS trusts over the next three years. You can follow Anna’s research also here https://annavolkmersbigphdadventure.wordpress.com/
Research has shown that people with dementia (PwD) tend to stay in hospital longer, have worse medical outcomes, and experience poor care more frequently than their peers without dementia (King et al 2006; Sampson, 2009). Research has also shown that caregivers of PwD are generally dissatisfied with the experience of inpatient care in hospitals, and that staff in hospitals often feel they are ill-equipped to cope with patients who have dementia (Borbasi et al, 2006; Cowdell, 2010)
Transitions can be periods of increased risk for PwD as each change in location or level of care requires a transfer of responsibility for care and co-responding transfer of medical and biographical information (Carayon and Wood, 2009). For PwD who experience difficulties communicating, or family caregivers who are unfamiliar or uncomfortable with the biomedical setting, it can be difficult to share this information effectively (Ridley, 2012). If staff are not alerted to relevant medical history or are unable to adapt to the particular care needs of the PwD there is an increased risk of preventable harm.
Research has shown that effective triadic communication between a patient, their carer and care provider can have a positive effect on patient safety and perceived quality of care. Hospitals-especially A&E departments- are dynamic and complex environments where staff are required to work within resource constrained, multi-goal system, at an extraordinary pace (Dekker, 2005) and it can be challenging to ensure effective communication occurs in that setting. One way to address this challenge is to use a facilitated communication tool, such as a form or a checklist, which can be implemented as a standard part of the admissions process for confused older adults in A&E. Evidence from other patient safety initiatives which have used facilitated communication- for example the safe surgical checklist or SBAR tool- have demonstrated considerable success in improving outcomes by reducing error and ensuring consistency in provision of care. A tool such as this could be an effective meant to improve care for PwD by attempting to minimize the impact of systemic and environmental barriers which make communication difficult in A&E.
Over the course of her PhD, Courtney will be working with healthcare staff, caregivers, and patients with dementia to understand the key challenges in triadic communication in A&E settings, and use collaborative co-design methods to develop a facilitated communication intervention. This research is part of a broader program of work on transitions in Dementia care which is taking place at University of Bradford.
We hope that in time there will be more money and resources being spent on clinically relevant research into communication and interventions to support people with dementia in this area. Dementia is a national priority and whilst there are few pharmacological interventions available, other non-pharmacological approaches are part of living well with dementia.
Borbasi, S., Jones, J., Lockwood, C. and Emden, C., 2006. Health professionals’ perspectives of providing care to people with dementia in the acute setting: Toward better practice. Geriatric Nursing, 27(5), pp.300-308.
Carayon, P. and Wood, K.E., 2009. Patient safety. Information Knowledge Systems Management, 8(1-4), pp.23-46.
Cowdell, F., 2010. Care of older people with dementia in an acute hospital setting. Nursing Standard, 24(23), pp.42-48.
Croot, K., Nickels, L., Laurence, F. and Manning, M. (2009) Impairment- and activity/participation- directed interventions in progressive language impairment: Clinical and theoretical issues. Aphasiology 23(2), 125-160.
Dekker,S., 2005. Patient Safety: A Human Factors Approach. Boca Raton,FL. CRC Press
Jokel, R., Graham, N. L., Rochon, E., & Leonard, C. (2014). Word retrieval therapies in primary progressive aphasia. Aphasiology, 28(8-9), 1038-1068.
King, B., Jones, C. and Brand, C., 2006. Relationship between dementia and length of stay of general medical patients admitted to acute care. Australasian Journal on Ageing, 25(1), pp.20-23.
Mahendra, N., & Arkin, S. (2003). Effects of four years of exercise, language, and social interventions on Alzheimer discourse. Journal of communication disorders, 36(5), 395-422.
Mesulam, M. (1982). Slowly progressive aphasia without generalized dementia. Annals of neurology, 11(6), 592-598.
Ridley, S.R., 2012. ” Sidelined”: Family Caregiver’s Experience of the Emergency Department: Insights from Family Caregivers of People with Alzheimer’s Disease.
Sampson, E.L., Blanchard, M.R., Jones, L., Tookman, A. and King, M., 2009. Dementia in the acute hospital: prospective cohort study of prevalence and mortality. The British Journal of Psychiatry, 195(1), pp.61-66.
Spector, A., Thorgrimsen, L., Woods, B. O. B., Royan, L., Davies, S., Butterworth, M., & Orrell, M. (2003). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia. The British Journal of Psychiatry, 183(3), 248-254.
Volkmer, A. (2016) Dealing with capacity and other legal issues with adults with acquired neurological conditions: A resource for speech and language therapists. J&R Press, UK. (Book)