Alzheimer's Australia Dementia Workshop 10 November 2014

Alzheimer's Australia Dementia Workshop 10 November 2014

Karen from Alzheimer's Australia ACT

By Eleanor Kerdo, HCCA Policy Officer

In November of last year we held a Health Issues Group on dementia and how to support those in our community with dementia.

It was an extremely well attended session and Karen from Alzheimer's Australia ACT was an excellent facilitator.

It was both informative and for me quite personal having recently lost my Nana to Alzheimer's and my grandfather recently diagnosed with dementia. 

Karen started by telling us some of the facts about the disease. 

There are more than 342,800 Australians living with dementia

This number is expected to increase by one third to 400,000 in less than ten years 

Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050

whilst age is a risk factor it is not an older persons disease

There are approximately 25,100 people in Australia with Younger Onset Dementia (a diagnosis of dementia under the age of 65; including people as young as 30) 

Three in ten people over the age of 85 and almost one in ten people over 65 have dementia 

In the ACT 3 people develop dementia every week

37% of people with dementia in the ACT receive formal care

1/3 are from a culturally and linguistically diverse background

Dementia is not a normal part of aging

There is no cure

 There is a huge rate of people developing the disease, and not necessarily receiving the services they need. 
  

For me it was interesting to explore and acknowledge that dementia and cognitive decline, whilst common in older people particularly is not a normal part of the aging process.

Dementia is the symptoms of physiological brain disease. There is no cure.

The physiological aspects of the disease can begin up to 20 years before symptoms occur.

Family are often the first to notice symptoms of their loved ones, on average 3 years before an official diagnosis.

There are many different causes of dementia which can be found by following this link.

Early symptoms included; forgetting appointments, forgetting names, inability to perform complex tasks, difficulty finding the right words, lack of ability to judge distance and change in depth perception, and difficulty remembering recent events or conversations. 

This is thought to be an issue with the hippocampus in the brain  which deals mainly with short term memory and executive functioning, however there is many different causes of dementia and a lot is still unknown.

The rate of progression of the disease varies person to person.

Often people with dementia do not loose long term memory so can be relating things to what they can recall for context so it feels like they live in a different reality.

Alzheimer's Australia run a National Dementia Hotline  1800 100 50 which is confidential and offers information about support available to people living with or supporting someone with dementia and are able to refer to where to get legal advice or health services. 

Alzheimer's Australia ACT also offer several services and workshops to support those in the ACT Found here.

Karen then gave us some tips around dementia friendly homes and design. There are several fact sheets available on this .

What I found most interesting was how perception of the physical environment changes, often leading to people living with dementia struggling to participate as they used to or feeling anxious or fearful.

For instance the ability to differentiate different sounds from a group of sounds becomes difficult. So communication becomes increasingly difficult if there is lots of environmental sound. If you are trying to give an instructions often showing what you are doing while speaking as visual aids makes it much clearer. There was also a suggestion to leave up to 7 seconds between questions to allow for a processing time and a response.

Another tip which I wish I had when my Nana was living with dementia was the idea of a Life Story Book. This is a book containing photos of the person with dementia in every year of their life. Then each day you can ask the person to point to who they recognise as themselves and that gives you an idea as to where they are in time so you can communicate more clearly with them.

Visual cues where often suggested such as wearing a dressing gown if trying to encourage someone to sleep so they can see it is night time, or cooking food in-front of people that the process is seen and there is cooking smells.

Pain and dementia was also discussed as there is often a myth that those with advanced dementia cannot feel pain. However all people with dementia feel pain though it can sometimes be hard to assess as they may struggle to communicate this or recognise that they are in pain. Nurses and health care professionals should be educated to recognise this and there is more information on this here.

I was fascinated to learn that those with dementia often struggle to visualise the world in 3D and have a changed depth perception which means they can have a different way to see and can struggle with the geography of their own body, seeing patterns, perceiving the world and have a reduced field of vision.

For instance a black and white kitchen tile might look like the black tiles are deep holes that the person could fall into so they may be reluctant to walk on that surface. This is true of zebra crossings also. 

Those with dementia may see the black tiles as holes which they may fall into.

Similarly a highly polished surface may look like there is  running water over it again making people uncomfortable to walk in that room.

Making sure a room is well lit and avoiding patterns can make things easier for people. Avoiding all white in a room also helps as it is hard to distinguish a white toilet from a white tile floor if you cannot see in 3D! So changing the seat to a bright colour can help. Or changing to colourful sheets on a bed may help people locate where the sheets on the bed is.

The main tip was to create meaningful activities with people living with dementia. Often peoples procedural memory works, for instance my grandfather was an electrician and is an avid gardener so activities that may hold meaning for him might involve the garden and small electronics tasks.

I wanted to thank all who attended for sharing their personal stories about living with or supporting people with dementia. I was touched by the openness of the room and the willingness to learn about how to make our community more inclusive for those living with dementia. 

We are conscious of dementia friendly design for all of the new Health Infrastructure in Canberra such the new University of Canberra Public Hospital.

There are lots of great resources on the Alzheimer's Australia website if you like more information.

Eleanor     

Canberra's New Minister for Health

Simon Corbell MLA is no stranger to the health portfolio having held the role in the mid-2000s but this time he will notice a difference.

It is going to be a very challenging time for the new Minister.

We are seeing increasing pressure on our public health system, with increased number of people accessing emergency departments and outpatient services.

There is uncertainty at the national level with the proposed introduction of policies that will undermine our universal health care system. This will make it more costly to see a GP and may well drive more people to public hospital emergency departments for care.

And we are part way through a large infrastructure program to design build facilities and services that will enable the ACT Government to meet the needs of the community for the next 30 years.

Mr Corbell has considerable experience in portfolios with strong vested interests and Health is no different. He will have many opportunities to draw on his skills and experience from the planning portfolio and as our Attorney General.

Health care is about people. It is not about buildings and equipment, although they play an important role. One of the strengths of our previous Minister, Katy Gallagher MLA, was that she did not forget about the people in the system and fostered good relationships. She recognised the needs of patients and staff who were at the front line of experiencing and delivering care. We are confident that Minister Corbell will take a similar approach.

We enjoyed a very good working relationship with Katy Gallagher as Minister for Health and look forward to working with Mr Corbell in his new role.

Darlene Cox

Executive Director

@darlenecox

Health Issues Group Blog Post: COTA Transport forum by Nicholas Wales

Health Issues Group Blog Post: COTA Transport forum by Nicholas Wales

Jane Thomson from Council on the Ageing (COTA) came out to HCCA on the 13^th of November 2014 to present an insight to COTA’s study on how older people in the ACT travel and transport options.

In 2013 COTA ACT conducted research on how older people in the ACT travel. The aim was to find out how older people in the ACT travel and to identify and explore the issues to recognise potential solutions/improvements.

443 people responded to the survey resulting in the following:

•       78% of respondents had access to a car.

•       60% used buses (31% of those didn’t drive)

•       Nearly half said they had difficulty travelling.

•       Older age groups & people with mobility/health problems much more likely to have difficulty.

•       People weren’t aware of all the transport options

•       People felt transport was important for social connection and were afraid of becoming socially isolated

From the survey findings COTA put together A Guide to Getting Around in Canberra, for older Canberra residents which was printed in October. The guide gives an overview of transport options including buses, community transport, flexible transport, taxis, scooters, bikes and walking. It also includes advice about how to use or combine these options, relevant phone numbers and web sites and information about social clubs and recreational opportunities.

COTA also provides free individual and group transport training which is delivered by volunteers. The free individual transport training can be delivered to people in their homes, it has been available since June 2014. This service is help build the skills and confidence by going along on bus trips and provide info on services, social supports and connections. The free group training has been running since July 2014, it provides a presentations to groups of older people on transport options. It covers options, tips and ideas with info on services, supports and connections. For more information on training click here.

Jane then went on to looking at the main transport options in Canberra. She listed driving, buses, community transport, taxis, scooters, bikes and walking as the 7 primary options for travel in Canberra.

Driving:

Driving is a great while you can do it but can be a challenge when you lose the licence. NRMA provides a Safer Driving School which can help seniors assess their skills and retain their licence. Park & Ride can help minimise driving and also avoid parking charges.

Buses:

Buses are a cheap mode of transport (free if you’re over 70), however they are hard to use if you have poor balance and/or mobility. There are also major issues with frequency and reach, especially on weekends, so where possible use the frequent bus network. NXTBUS is better than written or online timetables as it tells you how far the bus is away from your stop or if you have missed it. Accessible buses make it easier to get on and off the bus, however accessible buses only run on some routes.

Community Transport

Community transport is available through the 5 regional Community Services Organisations for eligible residents in their designated areas. The service offers door to door but are not always flexible and/or available, as this service prioritises medical over social travel. The Belconnen Community Services offers whole of Canberra service. There is also a Flexible Bus Service which is available for members of the community with limited access to public transport. Their contact number is 6205 3555

Taxis

The taxi service will take you door to door, however this service is expensive and there can be driver behaviour issues. Fares can be reduced, such as sharing or the taxi subsidy scheme. The ACT Taxi Subsidy Scheme provides financial assistance to ACT residents with a disability or significant mobility restriction that prevents them using public or community transport.

Other options

Scooters and bikes

Scooters are great for short trips. There is lots of advice around – Independent Living Centre, AusScooter, Guardian Mobility and Scooter Safe handbook. Scooters can go on accessible bus, if meet size/type conditions, but you cannot drive them on a main road.

Electric bikes are a great substitute for easy travel, as the electric motor will assist you when needed. Bike hire available through SEE-CHANGE. Electric bikes can use on footpaths, cycle paths and roads

Walking

Walking is great for your health, however poor paths and ramps can be an issue. Fix My Street is an ACT Government initiative, where the public can put in a repair request for a specific location. You can contact them online or phone 13 22 81.

Jane stated that COTA will continue providing transport training and information through volunteer peer-educators. COTA would also like to update the transport Guide, this is depending on feedback and funding.

COTA will continue to lobby for better transport options in Canberra with the help of community involvement.

If you would like any further information on the services and information COTA supplies please contact them on 02 6282 3777 or email contact@cotaact.org.au

You can also visit their website at: http://cotaact.org.au/

HIP Project Officer 

Nicholas Wales

Conference Report SYMPOSIUM ON POPULATION AGEING AND AUSTRALIA’S FUTURE Shine Dome, Canberra, Tuesday 11 November 2014 by Kay Henderson

SYMPOSIUM ON POPULATION AGEING AND AUSTRALIA’S FUTURE Shine Dome, Canberra, Tuesday 11 November 2014

Background

The Symposium was sponsored by the Academy of Social Sciences in Australia (ASSA) in collaboration with the ARC Centre of Excellence in Population Aging Research (CEPAR).  The Symposium was held in conjunction with an Annual Meeting of FSSA that included a book launch and a lecture on income contingent loans by Prof Bruce Chapman, both held after the Symposium closed and each of which I also attended.

Much of the Symposium ranged well beyond health care, with general policy issues also covering social welfare, social and population change and economic issues.  However, health care consistently came up within the context of general discussion.  The Keynote Speech was given by the Age Discrimination Commissioner, Susan Ryan, who spoke on “The Longevity Revolution – Crisis or Opportunity?”   The other speakers at the Symposium were grouped into four “panels”:

1. Societal Ageing:  What it means and why it matters;
2. Population Ageing:  Global, Regional and Australian perspectives;
3. Improving Health and Wellbeing; and
4. Responses by Government and Families/Individuals.

Within the context of general discussion of the implications of an ageing population, two presentations had particular relevance to issues of health and the funding of health care.  One dealt with the enhancement of “cognitive capabilities” over an individual’s lifespan and the other with the interlinked issues of ageing, entitlement and the funding of health care.

Cognitive Capacities

Prof Kaaren Anstey has the dual titles of Director, Center for Research on Ageing, Health and Wellbeing, and Director, Dementia Collaborative Research Centre – Early Diagnosis and Prevention, ANU.  Her presentation covered what is known (in a preliminary sense) about what happens to people’s cognitive capacities as they age.  The term “cognitive capacities” refers to memory, thinking, reasoning, problem solving, planning and processing speed.

Once, it was thought by psychologists that “intelligence” was innate and relatively fixed throughout life.  Now, researchers view cognitive abilities in a much more fluid and dynamic way.  Environmental and genetic factors come into play, and the trajectory of cognitive abilities through life is not predetermined.

Prof Anstey focused on two elements in cognitive development over a lifespan.  The first, “cognitive reserve”, is the peak cognitive ability that an individual achieves and is a reflection of optimal brain development and education.  The second element is the rate of cognitive decline through adulthood and into old age.

There is growing evidence that the brain is far more plastic than previously realised.  Research on brain development combined with increasing longevity suggests that our perspective on education needs to change.  Participation in education at various points during adulthood may have influences on the brain we have not yet imagined.

There is still much to be learned about the cognitive capacity of the brain, particularly into old age.  Researchers are now examining whether there is a link between cognitive capacity and dementia.

Prof Anstey stressed that bringing all our knowledge together and creating the best possible public policy for cognitive health is likely to promote a genuine increase in the numbers of adults who age well and to reduce the incidence of late-life dementia.

Ageing, Entitlement and Funding

Jane Hall is Professor of Health Economics, Centre for Health Economic Research and Evaluation, UTS Business School.  Her presentation, co-authored with Kees van Gool, examines the phenomenon noted by the OECD that in developed countries health care expenditure increases at a faster rate than national income.  For Australia, health care expenditure is expected in the Commonwealth Government’s “Intergenerational Report” to grow more rapidly than Commonwealth Government spending on aged care and pensions.

Prof Hall noted that the Australian Institute of Health and Welfare regards an increase in the prevalence of chronic disease as Australia’s biggest health problem.  However, Prof Hall also notes that while ageing populations have resulted in a greater incidence of chronic diseases, treatment has changed in such a way for most diseases that patients expect to manage their conditions so as not to have to withdraw from normal life.  There is a substantial variation in health within all age groups.  Interestingly, almost half of the 85+ age group rate their own health as good to excellent.

While ill-health is variable within populations and particular age groups, public funding is designed around three main funding streams – for hospitals, pharmaceuticals and medical services – that are separate and inflexible.  Prof Hall postulates that greater flexibility in service delivery could result in savings in the health care system.  For example, in an internet-connected world many patients may get some health services without physically seeing an expensive doctor.  The last year of life is the most expensive time for health care provision. Half of Australians die in hospitals, which are expensive, while surveys show that most would prefer to die at home.

Prof Hall concluded that ageing per se is not a threat to the sustainability of the Australian health care system.  In particular, it is not a threat to the continued viability of tax-financed universal health care insurance.  Prof Hall maintains that universal coverage and high levels of public insurance must be part of the solution to the policy challenge of healthy ageing.  Because of the wide variation in health status and expenditure, policy reforms that are aimed at the average are likely to miss their target and have sub-optimal health and financial consequences.

Comment

While both presentations were by necessity delivered in very general terms, each highlights issues of relevance to the continued evolution of health status and health care delivery in Australia.  Research into “cognitive capacity” is still at an early stage, and as more is known there may be significant benefits for ageing portions of the population generally.   A move away from health care funding and service provision that is based on “average” needs towards one that targets those within the population who have the most intensive needs would decrease the likelihood that ageing will in itself result in greater public health care expenditure.

For both issues, “Watch this space!”

Prepared by Kay Henderson

Medicare Local: Future Thinking Symposium : “whole system working” Consumer Representative Conference Report Bernard Borg Caruana

Medicare Local: Future Thinking Symposium : “whole system working”Friday 17 October.By Bernard Borg Caruana

Introduction:   Whole of Systems Thinking

‘Whole system working’ is a radical way of thinking about change in complex situations.  To solve some of our most challenging health and wellbeing issues, we will sometimes have to look outside of health for some of the answers. They are beyond the ability of any one agency or individual to fix. To drive better outcomes and get systems such as health working better, we need to think about the connections between the parts – how things fit together.

Format

This was an all day session 9am to 5 pm held at the Canberra Rex.

Sessions were hosted by the ACT, Murrumbidgee ans Southern NSW Medicare Locals and facilitated by Dr Norman Swan.

It was attended by over 100 people

There were 4 plenary sessions which ran in succession:

• ·         Vision for Primary Healthcare
• ·         Order from Chaos: whole system primary health planning
• ·         Whole System Working: Why the Mantra; and
• ·         Whole of system in Practice.

Some of the presentations can be found at:

 http://www.actml.com.au/professional-development/future-thinking-symposium-whole-system-working-2014

Medicare Locals and Health Networks

Medicare Locals will cease to exist as of June 301 2015 and replaced with Health Networks.

The ACT boundaries will not be changed but Murrumbidgee will have one Health Network replacing 6 Medicare Locals covering some 0.5 Million square kilometres.

1.      Vision For Primary Healthcare

A significant theme here that was raised by a number of speakers was the need to write the policy and drag the politicians behind us. We do not need permission to act when it is our health system. We need to galvanise communities and move it forward.

Professor Di O’Halloran had a number of interesting points in her slides regarding the Western Sydney vision for Medicare Locals. She urged us to “Stay true to our values and drive with ideals and health objectives.”

She proposed an approach for working across 3 levels to meet the various needs in Western Sydney. I have attached her Universal Triangle of the work of Medicare Locals

Proessor O’Hallon outlined some Medical Home principles and showed that they were close to the RACGP principles and also suggested some improvements

High priority, high risk groups need new integrated models of care: Patient centred, integrated Mdels of Care  for high priority groups Enrolment, Care Plan

     

Whole System Primary Care Planning

This session outlined the development of The Peninsula Model in the Frankston/Mornington district of Victoria.

Their starting point was:

Problem of short horizons and Services were not aware of one another or did not value one another.

A small team of well placed leaders were able to transform this chaos and bring som collaboration..

The team was 4 people but they were senior people from different organisations, Local Government, Exec Director of the Hospital, Regional Director of the State Department and CEO of the Medicare Local.

Although much was achieved, some factors that can still work against them is the sources of funding dealing with the resource contribution of various entities. Also there is a high cost of collaboration and from Jan to Sept 2014 they had 284 meetings.

However a key message is that “goodwill” is required. Organisations benefit by moving away from their “silos”. Alliances outside the organisation does not detract from the agency’s mission; it enhances or “spices” up the work.

3Whole System Working

I had high expectations regarding the speaker from Canterbury, New Zealand where they seem to be making great progress in integrated care. I had hoped that there would be more discussion regarding their Health pathways but this had been discussed the previous day in a more closed session. (see www.healthpathways.org.nz)

From what I gathered from the presentation, they have achieved a great level of cooperation across professions and providers and consumers. This contrasts heavily with Australia where such cooperation and collaboration is lacking. They are focussed on the “right thing for the patient”.

One of the key messages was “Progress not Perfection”.

Where possible the decision should be made where the clinician and the patient meet rather than applying broad policy.

Enable them NOT tell them what to do.

This presentation was followed by  a panel to discussion regarding integration in practice.

Some principles for implementation from the panel which struck a chord with me include:

·         Highest needs have multiple needs. Allocation of a house is easy; keeping them in the house is much harder

·         The system complicates the provision of support. Make the system easy for complex needs

·         Failures: cultures of some providers and professional cultures do not mix

•  
• ·         Go for one size fits most (rather than all).
• ·         Provide a spectrum of services rather than one size

• ·         Try different approaches:
• ·         Top down systems do not always work;
• ·         It is more effective if you give actors permission to act (actors = professionals and consumers)

These echoed key messages from previous sessions.

4    Whole of system in Practice

The final presentation discussed the Human Services Blueprint in the ACT which integrates: social services, housing, Justice, health and child welfare and is performing a trial in partnership with 50 families in the West Belconnen area for families with complex needs. They are just commencing a trial which will run for 18 months. It seeks to improve economic and social participation. 

By Bernard Borg Caruana