1 Dementia research in New ZealandMIND THE GAPS S Dementia research in New Zealand Dementia Research in NZ Chris Perkins NZDC
2 Why research? Why NZ research?Both looking for cure and care in dementia Whether overseas research is relevant to how we care for people with dementia in Aotearoa / NZ? Are there particular areas where research can only be done in New Zealand e.g. Maori / Pacific? Whether we already have enough information but not know we’ve got it. Do we need to find this research and share it? Do we act on the research we have already done or do we need to understand why we don’t have best/ evidence-based practice? And if we do change our practice is there any evidence that outcomes are better? And so on… Improve services Plan Advocate Monitor Curiosity
3 This talk is not about basic biomedical research looking for a cure for dementia. There is lots of NZ work in this area , particularly coming from the Centre for Brain Research and Professor Richard Faull’s efforts. An example of such a paper is Reid et al (2009). A splice variant of the TATA-box binding protein encoding the polyglutamine-containing N-terminal domain that accumulates in Alzheimer's disease. Brain Research, 1268, You might be relieved that I am not talking about this! What I want to know about is how we in New Zealand care for people dementia, not cure them.
4 NZ dementia care research over the decadesI found a total of 219 research papers and theses with increasing interest in dementia research over the decades since the 1980s. My challenge then was to find out what areas had been researched and where there were significant gaps.
5 Finding the gaps I couldn’t think of how else to do this, so I compared what research we know about with the categories in the NZ Framework for Dementia Care. First I updated Dr Prasadarao’s literature review which was published 2 years ago on ageing dementia. Tracked down publications and theses since then. I also included research that while not specifically about dementia, is applicable to the Framework. Most of this was in the area of prevention e.g. Pond et al (2010). Virtuously Watching One’s Health: Older Adults’ Regulation of Self in the Pursuit of Health. Journal of Health Psychology, 15(5), and there were a couple of theses on advance planning that seemed relevant.
6 AS you can imagine, lots of research didn’t fit neatly under one Framework heading. Some fitted into more than one area and some didn’t fit very well anywhere e.g. Jeffares, A. (2014). Should dementia sufferers be punished for past crimes? School of Law, Master’s Thesis, Victoria University URI: (suggests that person with dementia is different from the person historically committing crime. Discusses the persistence of personal identity in dementia. I put this under “Principles” of the Framework - but there wasn’t really anywhere to neatly slot philosophical type research. This is a square peg being forced into a round hole. About 20 pegs fitted in at least two holes. So after sorting the pegs into relevant Framework holes, this is what it looks like.
7 Overarching factors includes such topics as demography, services for different cultural groups and education, whereas principles were about autonomy, person-centred care and pathways. “Principles” is perhaps more reflective or philosophically-based and it would be interesting to see more work in this area , such as a feminist analysis of dementia care in NZ. Awareness includes risk reduction and so many of the papers are not specifically about dementia. Living well is a broad topic and not surprisingly much research fits under this heading. I will look at the different areas briefly to illustrate some gaps
8 An example: Overarching factorsDemography: 9 (3 population estimates, 6 ARC studies) Education of workforce: 5 Culturally appropriate services: Kiata (2004) x 2 intercultural residential care, 3 on Maori (one thesis and one about oral health) Young onset: 2, (one a thesis on architecture for YOD), Hearing impaired: 1, Mental illness ( PTSD) 1, alcohol, 1. Movement disorders: 1 Huntington’s, 5 Parkinson’s- from one research group Funding: 2 on cost to people/ family. Monitoring and evaluation: 1 Advocacy: 3 Note absence of anything on Pacific, people or those with intellectual disability. There were 3 papers on ageing in NZ Asian communities- but these weren’t specifically on dementia
9 Gaps: overarching factorsEducation / information for PWD and family/whanau WHAT DO THEY WANT? WHAT WORKS? Governance ??? Culturally appropriate services: Starting… People with pre-existing conditions (e.g. head injury, Intellectual disability, mental illness) Young onset dementia: NEED MUCH MORE ON THIS Drug and alcohol: WHAT HAPPENS TO THESE PEOPLE? Monitoring and evaluation: SERVICES? Advocacy WHAT HELPS?
10 Principles: gaps & questionsSelf-determination – how much people with dementia decide what they do? Person-centred care? Do people get this at home? In ARC? Services: are they “accessible, proactive, integrated and flexible”? (there is one paper on pathways through care)
11 Awareness: gaps & questionsThere is quite a lot on healthy living in older people e.g. about exercise, diet and reducing alcohol intake, but not much on specific efforts to prevent dementia. * Nothing about public or GP awareness of risk reduction strategies Nothing about dementia friendliness- how you do it in NZ, does it work? Do we need to make adaptations for NZ (from overseas practices)? Use of the media Need more research on EPOAs- who has them? Are they activated? Why don’t people have them? * However, the Centre for Brain Research, University of Auckland has a big study going, to identify how we might stop the progression of MCI into Alzheimer’s disease.
12 Assessment: gaps & questionsWhat is people’s experience of getting a diagnosis? When do they get it? Do GPs have the right skills? (DHB pathways will help) Do GPs diagnose MCI? Do they treat CV risk factors? How do complicating factor like mental illness or drug abuse affect diagnosis? Do people get the right information? Do they get a navigator? Can they access community services for early dementia? Does needs assessment help meet needs? Are specialist services readily available? There is heaps about cognitive assessment tools… what every baby psychologist writes a thesis on…
13 Living well: gaps & questionsMuch of this is about dementia navigators. It’s not clear who these people are, though Alzheimer’s Support people probably fill the role. The navigator is there throughout the dementia “journey” – What is the GP practice role here? There is nothing about how people are involved in care-planning or whether they feel they have been treated with dignity and respect (and what makes it feel like that) Nothing on access to physical and social activities Two papers on respite care are both > 10years old Overall, there is very little on how community care is delivered and whether people get what they want, I understand that a study is underway looking at the respite needs of carers.
14 Managing challenges: gaps & questionsManaging depression, anxiety, alcohol abuse in PWD Assessing people with challenging behaviour (BPSD) What do GPs actually do?? What do families know about BPSD? Pain management Support during transitions of care Abuse and neglect Hospitals and PWD Reducing stigma
15 End of life: questions Are personal, spiritual, cultural, religious values and preferences taken into account? Access to palliative care Family support, education and involvement PWD cared for in place of their choice Pain control What services are there for people dying with dementia? Do palliative care services know about dementia? Support for whanau after death
16 Gaps over all Decision making, person-centred care End of lifeBPSD assessment Policy Philosophy Media Experience of diagnosis Culture Unusual dementias Family education and information Effective community care What is the incidence of dementia in NZ?
17 Summarise: there is more and more research being done in dementia.However it is still quite patchy and not always directed at the areas we most need to know about. Research funding in NZ is pretty abysmal compared with other countries, for example about a third of Australia’s (and they still complain it’s not enough). BUT don’t get depressed. There are some really exciting topics for some keen young researchers to get their teeth into. The field is wide open- ready for people to do some really interesting stuff. Lets get into it and hear what people living with dementia one way or another have to say about how we can really improve things.
18 Where you can find the research listAssessment and diagnosis: Living well Managing challenges ARC Primary care Management and Treatment Square pegs or multiple holes…
19 Where you can find the research listPrinciples: End of life Awareness and risk reduction Overarching factors