A voice for those without: The Dementia Doula role

An article written by Wendy Hall, Managing Director, Dementia Doulas International

By creating the non-clinical Dementia Doula role over 7 years ago, our aim was to fill a gap in service provision, to not only be proactive, but also responsive and adaptive to the changing needs of all involved in supporting someone living with dementia from pre-diagnosis through to time of bereavement. From early on, we identified that when planning for the future, most people rarely include what they wanted their final days and months to look like. But even when someone is diagnosed with a life limiting disease, such as a type of dementia, it is still not a natural topic for discussion. Crowther et al. (2013), suggest that specialised end-of-life care for people with dementia continues to be unequal or non-existent when compared with other life-limiting illnesses. [1]

Even with severe decline in the symptoms of dementia and the increasing complexity of physical and psychological needs, the disease was not necessarily recognised as terminal. [2] While someone living with dementia is entitled to receive palliative care services, those living within a residential aged care facility or at home, receive specialised services at a rate of 2.4% when compared to someone with cancer receiving services at a rate of 75.4%. [3] There were no specialised palliative care services specific to someone with a diagnosis of dementia. [3]

Studies also showed that people with dementia, along with family members, have palliative care needs equal to those of someone with terminal cancer. The difference being someone with advanced dementia is not routinely assessed in determining their palliative care needs at any given time. [4] The flow on from this meant there was an inconsistent approach to building supportive networks around the person to ensure their end-of-life plans were in place or enacted when the time came.

When someone with dementia is nearing end of life, the signs may not be as clear as for someone without. Terminal agitation may not be as easily recognised and can be mistaken for a ‘behaviour,’ rather than representing that end of life is approaching. The person may appear restless, hitting out, moaning and/or appear uncomfortable, they may refuse any oral intake. If end of life is not a consideration, this can lead to unnecessary medication administration or hospitalisation, rather than palliative type treatments focusing on comfort care in a familiar environment.

By training our Dementia Doulas to be aware of these differences, they are better placed in preparing both staff and families earlier for a coordinated approach and assisting in how the person’s wishes (if captured or documented) will be enacted. They empower families in identifying how they want to be involved in end-of-life care provision which may include taking the person home for their final hours or days.

In a joint policy statement, Palliative Care Australia with Dementia Australia (2018) highlighted that, ‘It is critical that people living with dementia and carers are able to access high-quality palliative care that is responsive, respectful, culturally appropriate, and which addresses the needs of the person receiving the care, respecting the person’s individuality, and promoting a good quality of life.’ [5] We identified that a Dementia Doula could be a driver of such care and deliver compassionate care outcomes ensuring they moved from a ‘nice to do’ to an absolute ‘must do’ practice.

With an increasing awareness of the future role Dementia Doulas will play in end-of-life care for someone with dementia, we are excited with the interest from community home care providers in training staff as Dementia Doulas. We now look forward to embedding the role into the staffing model of all community and aged care settings to ensure a good death experience by all.

Author

Wendy Hall

Managing Director

Dementia Doulas International

Reference

1. Crowther J, Wilson KC, Horton S, Lloyd-Williams M. Palliative care for dementia--time to think again? QJM. 2013 Jun;106(6):491-4.
2. Jones K, Birchley G, Huxtable R, Clare L, Walter T, Dixon J. End of life care: A scoping review of experiences of advance care planning for people with dementia. Dementia (London). 2019 Apr;18(3):825-845.
3. Palliative Care Outcomes Collaboration. Patient outcomes in palliative care: National results for July – December 2016. Detailed report [Internet]. Wollongong: University of Wollongong; 2017 [cited 2024 Jan 30]. Available from: https://documents.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow231313.pdf
4. Fox S, FitzGerald C, Harrison Dening K, Irving K, Kernohan WG, Treloar A et al. Better palliative care for people with a dementia: Summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliat Care. 2017 Jul 14;17(1):9.
5. Palliative Care Australia. Joint policy statement: Palliative Care Australia and Dementia Australia [Internet]. Canberra: PCA; 2018 [cited 2024 Jan 30]. Available from: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2015/04/Dementia-Policy-Statement-2018_Final-New-Template.pdf