Is ageing-in-place a viable option for carers of people with dementia?

Is ageing-in-place a viable option for carers of people with dementia?

An article written by Dr Janice Du Preez, University of Western Australia

Whilst evidence suggests that most people wish to age in place and carers are mindful of this during the caregiving journey, many people are unable to die at home because their primary carers face barriers to accessing palliative care services. Instead, carers rely heavily upon emergency departments (EDs) to help them manage problems such as dysphagia, behavioural responses and incontinence that arise from their care recipient’s cognitive and functional decline.

Understanding this reliance on EDs and the barriers to accessing services is needed. An important first step is to identify the systemic barriers and carer’s perceptions of their needs, and that of their care recipients, upon hospital discharge. The aim of an ongoing randomised clinical trial titled the ‘Carer End of Life Planning Intervention in People Dying with Dementia’ is to identify these barriers and provide evidence for increased palliative care support provision for primary carers caring for people living with advanced stage dementia both in the home and in residential aged care. Qualitative analysis of the pilot trial data emphasizes carers’ perceived needs, the barriers hindering access to accessible resources and inadequate models of care across service providers that drive ED admissions rather than supporting access to palliative care services. Evidence suggests that clinicians’ reluctance to predict palliation and the need for end-of-life care is one of the main barriers to accessing specialist palliative care services. Additionally, apparent poor service provision and low levels of dementia-specific training including disease trajectory and end-of-life care of hospital staff, in-home care service providers and residential aged care providers leaves carers feeling overwhelmed by circumstances beyond their control resulting in their mental ill health.

Many reactive hospital admissions could potentially be avoided if the issues commonly described by participants were better managed by health professionals and earlier referral to palliative care support. When communication between stakeholders is timely, appropriate, collaborative, and person-centred, and the collective intention is to promote quality of life, minimise hospital admission and length of stay through the timely provision of specialist palliative care services, people dying of dementia will ‘no longer be subjected to protracted, potentially uncomfortable and undignified deaths.’

Author


Janice Du Preez

Research Associate, University of Western Australia

Senior Occupational Therapy Consultant


 

Reference

  1. Du Preez J, Celenza A, Etherton-Beer C, Moffat P, Campbell E, Arendts G. Caring for persons with dementia: A qualitative study of the needs of carers following care recipient discharge from hospital. BMC Palliat Care. 2023 Dec 13;22(1):200.
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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.