By Professor Jane Farmer, (pictured below) Director, Swinburne Social Innovation Research Institute
Having spent much of my career researching rural communities and services, I suggest there are three issues that – if tackled – would help to make a difference in rural and remote dementia care. These are reflected in articles in the Jan/Feb/Mar 2021 issue of AJDC and in the recent book I co-edited, Remote and Rural Dementia Care: Policy, Research and Practice (Innes et al 2020) (see p44 in the Jan/Feb/Mar 2021 issue of AJDC). They are:
- Better operationalising care as an ecosystem that makes best use of what is available locally, distant and online.
- Embracing people living with dementia as integral to our rich, ongoing community life.
- Understanding dementia as a multi-faceted phenomenon, woven from different cultural, social and biomedical aspects.
As Gardiner et al highlight in this issue (p35), rural is a distinct service provision space. Internationally, rural populations are ageing, so proportionately rural regions are more affected by dementia than cities. Small numbers of people living with dementia in individual rural places means practitioners may lack experience with dementia. Rural people tend to experience layers of adversity, including higher levels of poverty, fewer economic opportunities and reduced access to services compared with cities (Lawrence-Bourne et al 2020). Consequently, dementia may not have highest priority.
Care ecosystems: discussion of services for rural places can sometimes seem like a contest between online and on-the-ground provision (Perkins et al 2019). Articles in this issue highlight that, in fact, marrying across service offerings is a sensible way ahead. Internationally, there exist some good ideas that can support rural dementia care: WHO has the mhGAP program, a toolkit that can build local skills and knowledge in dementia care (WHO 2019) and Austria developed the Dementia Service Centre model that helps rural families, carers and service teams work together around the evolving needs of a person living with dementia (Auer et al 2020).
‘It takes a village’: as highlighted by Leone et al in this issue (p24), people with dementia should be able to access the full range of services and amenity, as their human right. However, there are gaps in opportunities for people with dementia to lead enjoyable, thriving lives in communities once they are diagnosed – an issue which surely mitigates against seeking out the early diagnosis that professionals advise. Empathy is a powerful force, and when I read the following lived experience – written for inclusion in our book – my understanding of some of the challenges rural residents face began to take shape:
Rural and remote dementia care
The AJDC team was thrilled when Professor Jane Farmer from Swinburne University of Technology agreed to write the p2 Comment for the January/February/March 2021 issue (you can read this on the left) – which focuses on rural and remote dementia care.
Why? Well Jane has recently co-edited a book (with Anthea Innes and Debra Morgan) on this exact topic, titled Remote and Rural Dementia Care: Policy, Research and Practice (published by Policy Press).
One of the book’s chapters focuses on Australia: Addressing Dementia Needs in Australia and was contributed by Professor Irene Blackberry, Dr Clare Wilding, Dr Michael Bauer, Dr Margaret Winbolt and Dr Hilary Davis.
Other chapters consider the experience of people with dementia living in rural areas in other countries, including Norway, Ireland, Austria, Canada and Scotland.
Distributor NewSouth Books is offering AJDC readers a 30% discount when purchasing this book. To order, email firstname.lastname@example.org with your name, delivery address (excluding PO boxes), quantity required, book title and ISBN (9781447344957). The price for AJDC readers is $69.99 (normally $99.99, hardback) plus $12.50 delivery. Free delivery for 3+ copies.
The book can also be purchased (as a hardback or e-book) via the publisher (https://policy.bristoluniversitypress.co.uk/) or Amazon as a Kindle e-book (about $A40).
“When I was told I had early onset Alzheimer’s disease I was alone, and I had to get into my car and drive alone for two hours afterwards… for a long time, I couldn’t find the courage to tell anyone. Living in a rural area, everyone knows everyone. I had owned a business and lived on the main street… I worried about the reaction of my town. Would they think I was mad?” (Rochford-Brennan 2020 pp268-272).
The author concluded that ultimately though “it takes a village to support a person living with dementia” (p267). With determination, Helen Rochford-Brennan found new ways to live her life in the village, in the process educating her neighbours that people living with dementia can continue to lead valuable thriving lives.
Two-eyed seeing: Lastly, my readings in rural dementia care have led me to understand the value of seeing dementia experiences from the perspectives of different knowledge systems and cultures. In our book, Jacklin and Chiovotte (2020) discuss working with Canadian First Nations communities and the significance of marrying Indigenous beliefs about dementia with Western biomedical perspectives: “two-eyed seeing” they called it, noting that, “Indigenous populations place less emphasis on the Western diagnostic labels and biomedical perspectives associated with cognitive decline” (p246).
The authors depict dementia care with Canadian First Nations communities as best achieved through interweaving traditional cultural beliefs, biomedical interventions and feelings and experiences related to colonisation. In line with this, it was interesting to read Haszard’s commentary in this issue (p32) about a DSA consultant in Alice Springs who adopted the Malparara Way – “a cross-cultural practice model developed in the early 1990s”.
While the issues I’ve discussed above for improving rural dementia care are significant in all places, perhaps there are more opportunities to achieve change in rural places where people still tend to know each other, to look out for each other and where there are policy moves to more place-based delivery. The pandemic has shown that service provision can change overnight, as the examples highlighted in this issue of AJDC show.
Auer S, Ratajczak P, Span E, Hofler M (2020) Timely Diagnosis Of Dementia In Rural Areas In Austria: The Dementia Service Centre Model. In: Innes A, Morgan D, Farmer J (Eds) Remote and Rural Dementia Care: Policy, Research and Practice 103-126. Bristol: Policy Press.
Innes A, Morgan D, Farmer J (Eds) (2020) Remote and Rural Dementia Care: Policy, Research and Practice. Bristol: Policy Press.
Jacklin K, Chiovotte J (2020) Considerations In Dementia Care For Indigenous Populations In Canada. In: Innes A, Morgan D, Farmer J (Eds) Remote and Rural Dementia Care: Policy, Research and Practice 241-266. Bristol: Policy Press.
Lawrence-Bourne J, Dalton H, Perkins D, Farmer J, Luscombe G, Oelke N, Bagheri N (2020) What Is Rural Adversity, How Does It Affect Wellbeing and What Are The Implications For Action? International Journal of Environmental Research and Public Health 17(19) 7205.
Perkins D, Farmer J, Salvador‐Carulla L, Dalton H, Luscombe G (2019) The Orange Declaration On Rural and Remote Mental Health. Australian Journal of Rural Health 27(5) 374-379.
Rochford-Brennan H (2020) Living With dementia In Rural Ireland. In: Innes A, Morgan D, Farmer J (Eds) Remote and Rural Dementia Care: Policy, Research and Practice 267-278. Bristol: Policy Press.
World Health Organization (2019) mhGAP Intervention Guide – Version 2: For Mental, Neurological And Substance Use Disorders In Non-Specialized Health Settings. Available at: www.who.int/publications/i/item/mhgap-intervention-guide—version-2.0