Dementia conferences from a research advocate perspective

Dr Jane Thompson

Dr Jane Thompson was a carer for her husband who died of Alzheimer's disease in 2007. She has since seen the importance of the voice of people who have been impacted by dementia, to input into dementia research.

One of the major CDPC projects that Jane contributed to was the development of the first Australian clinical practice guidelines, the Clinical practice guidelines and principles of care for people with dementia and the consumer companion guide, Diagnosis, treatment and care for people with dementia (available for download at the CDPC Clinical guidelines for dementia resources webpage).

Why did you take up the opportunity to attend the Alzheimer’s Association International Conference (AAIC) and the Alzheimer’s Disease International Conference (ADI) in Chicago?
I attended ADI in 2017 in Kyoto and really enjoyed it so I was keen to go again. The fact that it was scheduled this year immediately after AAIC in the same location was a bonus.

I had never been to AAIC and had heard it was THE conference to go to for the latest developments in dementia research. I submitted two abstracts to ADI – both were accepted, one for an oral and one for a poster. The CDPC agreed to support my attendance at ADI - so that sealed the deal!

Tell us, from the point of view of a dementia research advocate and former carer, what you thought of AAIC?
It was huge with lots of US style razzmatazz. With nearly 6,000 delegates it was the biggest conference I have ever attended. I was disappointed that there was no reduced registration fee for people with dementia or carers – and let the organisers know, let’s hope to see next year this is changed.

I didn’t meet anyone else there who was attending as an interested member of the public/person impacted by dementia and there were no presentations from people with dementia or carers. So I felt it was lacking this perspective. If the public are to be truly engaged and involved in dementia research these sorts of meetings need to be more accessible.

Apart from this, what were the highlights for you?

There were many highlights though. Among those for me were presentations on:

- ‘aberrant network activity’ in Alzheimer’s disease(still lots of uncertainty about the fundamental neuropathophysiology)
- the latest in drug developments (some promising leads but no real breakthroughs)
- a fascinating session on the microbiome and the brain (pro-inflammatory bacteria may be more prevalent in people with Alzheimer’s disease - and inflammation may be a cause not a consequence of the disease)
- the contribution of female hormones and reproductive history to Alzheimer’s disease and dementia risk in women (lots of full term pregnancies seem to be protective; the brain metabolises white matter during menopause and oestrogen therapy may be neuroprotective in women around the time of menopause but may have negative effects on cognition in women over 65 – but more research is needed)
- resistance and resilience to Alzheimer’s disease (having ‘purpose in life’ decreases the risk of Alzheimer’s’ disease and buffers the effect of pathology on cognition)
- how neuroimaging is transforming Alzheimer’s disease research and care, and
- the importance of personalised psychosocial interventions for people with dementia and carers.

Any concluding comments on AAIC?
My overall impression of AAIC was that there is lots of research happening - with a sense of urgency, there’s progress, but there’s still a long way to go yet.

However, disappointingly there was little evidence of, or acknowledgment of, public involvement in any of the research except for a few presentations, generally from the UK who we know do it well, particularly if funded by NHS/NIHR – because they have to!

Would you tell us about your experience at ADI?
It was much smaller, about 650, but there was a significant presence of people with dementia and carers. Dementia Alliance International had a high profile and there were presentations from both people with dementia and carers.

People with dementia are rightly developing a strong voice. However, from my own perspective I would also like to see a higher profile and equally strong voice for carers/care partners as advocates for dementia research.

Tell us about your ADI presentations?
My oral presentation was entitled: “The NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People.: An Australian model for public involvement in dementia research” in which I described how the CDPC has successfully integrated people with dementia and carers into almost all aspects of its research and knowledge translation activities.

We should be proud of this and advertise it widely! And, in my poster I addressed my ‘pet’ subject, jointly with Belinda Goodenough: “The language of public involvement in research. What’s in a name and why does it matter?”

I argued that the evolving public involvement in research movement has a growing lexicon to describe participants and practices (‘who’ and ‘what’) but no clarity of terms – which I think is confusing and needs to be addressed. It generated some interest, but trying to explain my point to delegates from Taiwan was challenging.

Were there any stand-out presentations for you?
There was an excellent and powerful presentation by Linda Clare (researcher) and Keith Oliver (Ambassador and public contributor who has dementia) of a project about living well with dementia, funded by NHS/NIHR and Alzheimer’s Society UK.

Any other comments or highlights on ADI?
It was good to see a stronger focus on patient/carer/public involvement in research and evidence of its value, highlighted.
Other highlights for me were these presentations on:

- carer support and training (reinforcing Kitwood’s description of caregivers as ‘the physicians of the human spirit’ and the need to support them to care appropriately and well)
- women and dementia (emphasising the uniqueness of women as both patients and carers)
- the Dementia Discovery Fund (a venture capital fund investing in novel science to create new medicines for dementia)
- models of care (increasing evidence of the benefits of small group home-like models of care)
- how patients and families are transforming research through the National Alzheimer’s and Dementia Patient and Caregiver Powered Research Network in the US.

CDPC group

Caption (left to right): Tara Quirke, Dr Irja Haapala-Biggs, Jennifer Thompson, Professor Simon Biggs, Professor Sue Kurrle, Sally Grosvenor, Dr Jane Thompson, Professor Henry Brodaty, Ashley Culley and Dr Suzanne Dyer