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     

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

Forum with health care consumers to discuss the ACT Chronic Disease Strategy

In recognition of the critical importance of effective chronic disease management, the ACT Government Health Directorate is developing a new ACT Chronic Disease Strategy, which will further develop the previous ACT Chronic Disease Strategy 2008-2011.  The strategy will explain how chronic disease care will be managed in the ACT community into the future.   

The prevalence of chronic diseases throughout the world is increasing significantly.  Effective chronic disease management requires working in partnership across a range of sectors, including consumers and community members, all levels of government , the private sector and non-government organisations.  It also means that consumers are supported in learning about the health and community services that are available to us.

So much of chronic disease management happens outside of the system.  We need a broad-based approach to this, including private and public providers of services, as well as services provided by non-government, community-based organisations (eg community transport, home help).  The development of the new ACT Chronic Disease Strategy requires wide consultation, and we are pleased to see that the Government is planning meetings with key stakeholders, consultative fora and a longer timeframe (6 weeks) to consult on the draft Strategy.  

Chronic conditions not only compromise our health and well-being, but can also have a significant impact on our family and friends, our capacity to be active in the community, as well as earning an income. 

Consumers need support to navigate the way through the wriggles and turns, and over the hurdles that occur in our health system.

On 28 February, Health Care Consumers Association hosted one of the first of these consultative fora.  The session was facilitated by Cathie O’Neill, a senior consultant specialising in the healthcare sector and engaged by the ACT Health Directorate to draft the Chronic Disease Strategy.

This post summarises specific areas which consumers wanted felt strongly about and which they wished to see addressed in more detail in the strategy.  

These included:

Chronic disease management outside the ACT Health Directorate (ACT HD):  an explanation of how ACT HD will promote the management of chronic disease within the community in the frequent circumstances when it falls outside the formal ACT HD system.

Advanced care and residential care directives: currently some consumers feel that despite having signed a care directive, their wishes may not always be respected because clinicians fear possible litigation.  

Links between Calvary Hospital and The Canberra Hospital: Ambulatory and outpatients: the strategy must address equity issues between the two hospitals in respect of referral for ambulatory services.  It needs to specify the number of patients at Calvary whose only continuity of care can be provided through referral back to ACT Health at The Canberra Hospital and outline a solution to address this “gap” in the system.

Diabetes: the Diabetes Strategy was still incomplete.  The Diabetes “Buddy” scheme appeared to have faded out.  Consumers wanted to know if there is a strategy to re-establish this excellent initiative?

Community Partners and Support Services: the invaluable services these groups provide need to be highlighted and formally recognised.  Many of these groups are actively supporting ACT HD to deliver its health programs and initiatives, but most lack funding, are under-resourced and much of the assistance they provide is not formally recognised. It is also felt that the HD ACT should do more to assist these Support Groups by advertising their services to the general community.  There is also a need to provide funding to educate GPs about community support services. 

Recognition of, and respect for, complementary medicine:  complementary medicine is extremely important and helpful.  However, services such as meditation, yoga and relaxation are only briefly touched upon in consultation with clinical staff.  This is an area which needs far more prominence and development, concentrating on specific areas of treatment.  

Listening to the patient’s story: getting the message across:  once qualified, clinicians often focus merely on treating a condition, rather than understanding and listening to the patient’s story. This should be used as an education tool right from the start; if medical students could be educated to improve, and understand the importance of, communication skills, this would be hugely beneficial to both patients and the medical profession as a whole.  It is also a low cost, effective solution to an ongoing problem.

Cross-referencing between health services: it is important that those living with a chronic disease are permanently recognised on admission to hospital; eg a system indicating “this is a chronic disease-registered patient”.  Currently, those with chronic conditions are only placed on a chronic disease register once they have been admitted to hospital several times; and they are eventually removed from the register, if they do not present at hospital again within a certain timeframe.  It is important that clinicians always recognise patients with chronic conditions, even when they have been admitted for treatments unrelated to their condition. 

Web-map for linking all relevant services:  there is an urgent need for a web-based effective “one-stop shop”providing details of all services available for those living with chronic conditions.  This discussion highlights the need for a comprehensive and current Health Services Directory that extends beyond services provided by ACT HD; many of the group were unaware of its existence.

Terminology to encompass “chronic disease”: people with chronic disease don’t think of themselves as sick on a day-to-day basis, because they live with the disease all the time; they would consider themselves to be “sick” if they have a flare-up of the condition.  It is also inappropriate to describe people as “sufferers” of a particular condition or disease, because, again, most do not consider themselves to be suffering from day to day.  “Living with a chronic condition” is an appropriate description.

Carers: play a vital role and must be included in the strategy.

Social workers: in many cases, social workers are too focussed on a narrow field.  They are often anxious to get people out of hospital and back home, without taking into account the patient’s family situation and pain management plan.  

Public holidays and weekends: it is important that the strategy explains how access to services will be handled during out of hours.  For example, oxygen services close down and the BOC emergency services are only able to cater for deliveries – they cannot, for example, cope with repairs or spare parts.  This puts consumers at risk.

Cross-border health issues:  the needs of those diagnosed in different health areas must be addressed – ie the strategy must include support for those living in NSW and accessing services in the ACT.

Discharge from hospital to home: it is concerning that many people, especially the elderly, are discharged from hospital without having the necessary support at home to cope with their condition.  A system needed to be implemented whereby patients could be monitored after leaving hospital to ensure they were being properly looked after.  

Secondary prevention:  consumers need quick and efficient access to advice on early prevention of chronic disease.  Currently there is room for efficiencies in this area – early treatment and prevention will offer huge savings.  Access to appropriate, timely treatment is needed – prevention is key.  For example COPD courses should be available for people before they contract the disease, rather than after they have been diagnosed.

Financial courses:  for many people with chronic disease, financial costs for treatment can be the “final straw”, adding yet another mental burden to their already stressful situation.  Mental problems caused by financial stress often exacerbate the physical condition.  Making people aware of their financial entitlements is important; this could be achieved through sponsorship with one or more financial services organisations.

Consistent case management: often you are your own case manager, but this is a complex task when you are dealing with declining health functions.  People need to be empowered and need an advocate.  It is important to have continuity – for example, having one case manager, rather than two or more, is likely to deliver a more effective outcome.

Community based Chronic Care Nurses and Nurse Practitioners: there is a strong need for nurse practitioners to coordinate care with other health professionals and a need for community-based Chronic Care nurses within the ACT.

Homogenous system: currently the system is not homogenous and the strategy must identify a plan to allow all stakeholders to communicate effectively to deliver a seamless and efficient service.  GPs and specialists are central to the strategy’s success.

The group agreed on the Draft Commitment Goals, which state:

“In the ACT we are all working together to ensure any person with a diagnosed chronic condition:

• Does not have to repeat their story unnecessarily

• Has a management plan, which supports self-management and contains goals for improvement and actions to take for acute or chronic events

• Is aware of relevant support options and how to access them

• Has their care proactively coordinated and managed

• Understands their need for, and adopts, secondary prevention

• Receives the best care, in the best place, at the best time

• Is supported by a system that is patient-centred, high quality and evidence-informed.”

Consumers will have the opportunity to provide more input to the strategy at “The Future of Chronic Disease Care in the ACT” forum on 16 March. 

Karen Jameson

Policy Officer

How is consumer feedback used to improve health services in the ACT?

HCCA Health Issues Group:

Are you interested in how consumer feedback is used in the ACT to improve health services?  are you interested in how consumers can provide feedback? 

Thursday June 17 2010, 12.00 –2.00 at the HCCA offices in Hackett

A light lunch will be served at the beginning of the event.  Please contact the office if you can join us.

At this forum we will have two speakers, and time for your questions on:

The work of the Health Services Commissioner from the ACT Human Rights Commission.
Mary Durkin, the Health Services Commissioner will come and talk about the role of office in dealing with complaints about health services and health service providers. Her presentation will cover the types of matters that the Commissioner can investigate, the process for handling complaints, the outcomes that might be achieved, and how complaints can be used to inform system improvements.

and

The work of the Consumer Engagement Team in ACT Health
Robyn Jensen is the team leader for the Consumer Engagement Team. She will speak about:
• the team’s role in managing consumer feedback across ACT Health,
• working with HCCA to provide consumer representatives on ACT Health committees,
• and other ways that they assist ACT Health to engage with consumers.

Note: Out of respect for the access needs of people with chemical sensitivities and people experiencing breathing related allergies and illness, please avoid using perfume, aftershave, essential oils or other highly fragranced products when attending this event.

Report on Health Issue Group - June 2008

The Health Issues Group was held on Thursday 26 June. It was well attended and participants have provided us with useful comments to progress. The main topic for discussion was electronic health records.

Tony Greville, HCCA policy officer, reported on a workshop he attended with Consumers Health Forum of Australia (CHF).

The main issues participants raised regarding the electronic health record were:

• content - What is included and how is it defined? What form will it take?
• access - Who can read it? Who can add to it? What about people who do not have computer access?
• ownership/security -Who owns the software and the content?

Content

What does it include? There was preference for this to be a medication record including over the counter and complementary results of diagnostic tests, medical imaging, pathology results as well as discharge summaries.

There was agreement that electronic discharge summaries must contain information that is understandable, accurate and precise. It needs to include medication details, follow up appointments for consultations and tests and arrangements for community nurse visits as well as in home care and support.

Access issues

Many aspects of access were discussed. There was considerable variation in the degree of access individual consumers preferred. This emerged from discussion on information needs individual consumers identified. This ranged from viewing all entries in the record, to seeing a limited range such as summaries of test results, clinical notes and observations and medical record.

All participants agreed that consumers must be supported to interpret and understand the contents of the record.

The issue of health literacy is an important one. Participants shared experiences as they learned more about illnesses and conditions their health literacy improved. There was agreement that an electronic health record needs to have the capability in the system to increase the level of access to information as our health literacy improves.

There was discussion of the benefits of a health record termed a save my life health record. This would include summary of information critical to the consumer’s health including diseases (such as diabetes), blood type, allergies, and current medication.

Ownership/Security

Ownership and security of the information was perceived by participants as a major barrier to progressing electronic health records. Participant’s expressed concern about the security of information if it is held by companies who are driven by the market particularly that personal health information maybe sold to insurance companies. Participants expressed confidence that a government controlled system would overcome this.

There was support among participants for a pilot to operate in the ACT Health. The ACT community has the highest rate of broadband access. This could be an opt in system. HCCA will do some more work on this.