Background Behaviours and psychological symptoms of dementia (BPSD) are prevalent, complex, and distressing for people with dementia and caregivers. They are associated with additional stresses on people and systems, resulting in care packages breaking down, hospitalisations, caregiver burden, cognitive deterioration, psychotropic polypharmacy, and poor quality of life (Brodaty, Connors, Xu, et al., 2015). They are often the result of an unmet need such as pain. People living with dementia are often unable to self-identify or report pain and may express their discomfort through responses perceived as agitation and aggression. The correlation between behaviours and pain is known (Atee, Morris, Macfarlane, et al., 2021), yet more needs to be done to raise awareness with care staff, and to provide practical support as to what works.
Aims To describe the characteristics of referrals to a health technology programme, developed in response to pandemic restrictions, which provides relationship-based support to care staff as they respond to behaviours, stress and distress.
Methods A pilot study evaluated the feasibility of the programme from June-September 2020. Referral data included demographic and clinical characteristics such as age and BPSD. Data were reported as descriptive statistics. All referrals received BPSD assessments using the Neuropsychiatric Inventory–Questionnaire (NPI-Q) (Kaufer, Cummings, Ketchel, et al., 2000).
Results Referral characteristics: Mean age: 84.3 years (SD = 6.7); Female: 67.9%; Alzheimer’s disease: 33.9%; Primary cause of behaviour: delirium (32.1%); pain (25.0%); Mean total NPI-Q severity score: 12.8 (SD = 6.5); Mean caregiver distress score: 15.7 (SD = 9.0); Referrals with ≥5 neuropsychiatric symptoms: 67.9%; ≥9 symptoms: 14.3%; Top three primary behaviours on referral: agitation, physical aggression, anxiety.
Conclusion BPSD were caused primarily by delirium and pain, both of which are prevalent but under-diagnosed in people with dementia (International Psychogeriatric Association, 2012). If care staff can access real-time support to mobilise assets and resources and build capacity, we can reduce the need for more costly health resources and the human costs of personal crisis (Macfarlane, Atee, Morris, et al., 2021).
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