NZ Dementia Summit 2015: A Carer's View

When Carers NZ asked me, halfway through the NZ Dementia Summit, if I’d like to write a review of it, I already had pages and pages of notes.

It’s not just that I’m someone who like to write things down. It’s also because for me, as a carer, the content was so compelling.

Highlights? It’s hard to choose. Here are my standout themes:

Primary care is where the action is

Catherine Hall, Executive Director of Alzheimers NZ, began by talking about the urgent need to shift the balance of services from residential care, to home and community. Because that’s where most people with dementia live. And Ken Greer - GP with a special interest in elder care - focused on ways to increase capability and capacity. Around dementia diagnosis and support in primary care it’s clear, because of the huge increase in the incidence of dementia, that the existing model - diagnosis followed by referral to a specialist for treatment - is neither sustainable nor practicable.

Claire Dale - Research Fellow at the Retirement Policy and Research Centre, University of Auckland - highlighted the outdatedness of current models for dementia care. Not surprising, given they’re based on constructs about health and disease rather than caring and support.

Early diagnosis is critical

I’ve been in two minds about early diagnosis. But psychiatrist Matthew Croucher was clear - it really matters. He talked about the explanatory power of a dementia diagnosis - people need a name for what’s happening to them. And they need to plan ahead - how can you do that if you don’t know?

Matthew went on to explain the importance of having the time to gather formal and informal support. And having the knowledge to recognise and avoid common pitfalls. 

We need to know more

As Grainne Mosse - Managing Director, Bupa - explains, there’s a huge need for awareness-raising in communities. And that’s just the basic stuff - helping people understand dementia and its effects. We have to build on that by working out how to create dementia-friendly communities.

Some things we know for sure. There will be many more people diagnosed with dementia in the next few decades. They will be living in their own homes for longer. And the number of people with dementia who have family caring for them will continue to decline.

We need community-facing care environments to maximise the engagement and involvement of people with dementia and those around them.

We also need to build a detailed understanding of what people with dementia, and their carers, want and need.

The presentation by Dave Grimmond - Economist, Infometrics - was revealing. His research tells us, among other things, that 13% of the adult population are carers of some description. But the Census and the Time Use survey, which these figures are based on, tell us very little about the people receiving this care. Many of them will be living with dementia.

We need to share more

Day Two of the Summit began with a demonstration of NZ Dementia Cooperative’s new web portal. David Gillespie - Tech Management Group - walked us through it. He showed us how it can help clinicians, researchers and others to get together, talk and share information and ideas. It has the potential to get everyone who’s involved with dementia on the same page.

The presentation by Simon Bennett - Maori Clinical Psychologist, Massey University -  focused on a Maori model of wellbeing for people living with dementia. With its emphasis on collectivity, interdependence, cooperation, spirituality and whanau, it challenges us to develop a better system. An approach based on aroha, wairua and generosity. And as Simon points out, a bit of research into how whanau, hapu and iwi are already living with dementia wouldn't go amiss either.

Process matters

Woven through all of this was a fast and powerful interactive process, based on the learnings from complex systems and leaderful practice. Stephen Jacobs - Co-Director, Institute for Healthy Aging, Auckland University/Waikato DHB - led workshop sessions that got us thinking deeply about issues and problems before brainstorming possible actions to address them. He and his co-facilitators modelled a learning culture where solutions are not imposed but instead allowed to emerge. Where diverse groups of people are open to ideas yet feel able to disagree. Where we share both our successes and our defeats, creating teams across different levels, roles and disciplines that work together to improve the welfare of people with dementia.

We already have many initiatives that are working well to improve the quality of life for both people with dementia and for their carers. But we’re not there yet. As a carer of a person with dementia, the Summit made me see the potential for so much more. It’s such important work.

In the words of Sarah Clark - Office for Senior Citizens, MSD -  “This is not about us and them. It’s about all of us. How do we want to live, care and be cared for?”

Themes from the workshops at the NZ Dementia Summit are currently being analysed, collated and written up for wider distribution.