Dementia Care in Hospitals Program

It’s 10am on the morning of 25 June, and I am in the auditorium of The Canberra Hospital (TCH) listening to Associate Professor MarkYates of the Ballarat Health Services Dementia Care in Hospitals Program explain what this program is about to the assembled TCH staff. He’s clearly practised at it, which might be expected, since the program has been embedded in no less than 25 Victorian health care providers to date. It’s been so successful at improving the experience of treatment in hospital for patients with cognitive impairment that it’s pretty much standard in Victoria.  Mark is here today to kick off the program’s national rollout. TCH is one of four pilot sites across Australia selected to introduce the program and 18 months later, comprehensively evaluate its effect.

Prior to Mark Yates, we hear from Jane Allen, the CEO of Alzheimer’sAustralia ACT. She tells us that ‘dementia’ is a catch-all term for a range of symptoms and types of cognitive impairment, of which the most common is Alzheimer’s, but it is only one of over one hundred possible diagnoses. It’s most common in the over-65 age group, but its prevalence is increasing amongst younger people, although no one is sure why. It’s the single greatest cause of disability for older Australians. While people don’t often present to hospital with dementia as their primary issue, people with dementia are prone to a range of injuries and illnesses, and therefore more likely than those without dementia to be in hospital. For these people, the busy hospital environment is a confusing and stressful place, and can cause challenging behaviours as they try to cope.

Dr Anil Paramadhathil is the Director of Geriatric Medicine at TCH, and the man leading the introduction of the Dementia Care program here. He shows us data from some research he did recently, which looked at the proportion of the total people admitted to TCH over 6 months who had some form of cognitive impairment noted on their record. He had expected 20-30%, a proportion which would be in line with what the Ballarat team’s research has found. He found less than 1% had this information on their record. This backs Mark Yate’s assertion, that 1 in 5 families feel that the hospital has no idea that they are caring for someone with cognitive impairment.

This morning session is about what the program does and how it helps. It’s a simple program with three main elements. The first, and to my mind most radical, is that all adult patients admitted to hospital are screened for cognitive impairment. It’s not as onerous as it sounds, because it’s not a diagnosis, but one or more simple tests of function. For example, request the patient to draw a clock face, and then draw on the hands of the clock to show ten past eleven. I learn that the ability to carry out this apparently simple task says a lot about the absence or presence of cognitive impairment.

Step two, once cognitive impairment is found, is placing a symbol at the patient’s bedside to alert staff, in much the same way as a hearing or sight impairment would be identified. The beauty of a simple, visible symbol is that any of the staff approaching the bedside, from the food service staff to the clinical team, will receive the same message, and providing they have been effectively trained in caring for people with cognitive impairment, a systemic dementia-appropriate response should occur. Mark shows us the symbol, which was developed with a consumer focus group. To me it looks like someone radiating superpowers, but apparently explaining what the abstract symbol means has become an opportunity for staff education, and that’s got to be a good thing. Mark assures us that when this program is in full swing, we’ll see that symbol above one in three of all adult beds in TCH. 

The last part of this program is staff training in how to care for and communicate with patients with a cognitive impairment and their carers, so that staff know how to modify their own behaviour and responses in these circumstances.

The afternoon session of staff training begins with the story of Joan, whose husband Kyle was hospitalised  at an unnamed hospital for a minor operation. Kyle suffered from Alzheimer’s, and when he was hospitalised Joan asked that this information was clearly marked on his notes. The information seemed to have gone missing fairly soon after admission however, and things went downhill from there. Kyle’s Alzheimer’s wasn’t necessarily obvious to a casual observer, and when Joan witnessed, among other things, a nurse presenting Kyle with his medication, asking him to take it and then leaving him to it, she realised that although she hadn’t planned to stay, she would have to, as there was no way he could follow such instructions by himself.  Things came to a head when a family member noticed that Kyle had removed his patient ID band because it was bothering him. Joan advised the hospital that he needed another one but before this was done, and in one of Joan’s absences, he disappeared. I’m sure I wasn’t imagining the discomfited seat shifting in the nursing staff around me as we listened to this tale. Fortunately the situation resolved without further drama, as Kyle turned up on foot at his son’s house 3km away, but not before the police were involved and a procedural hole a mile wide was clear for all to see.

I have a different perspective when I leave the auditorium. As I emerge into the foyer I am momentarily disorientated and it takes a few seconds to see which way I need to go. I notice it is noisy, and those bright artificial lights are a bit stressful. All around me are strangers dashing, limping, wheeling hither and yon. I’m OK though; I know where I am and I’m pretty sure I can still draw a clock face and place the time on it. It’d be good if I could also remember where I parked the car though.

Kate Gorman

Consumer Representatives Program

"Aged Care: The People’s Forum" – at the National Press Club, 13 August 2013

Carol Bennet, CEO of CHF, at the Aged Care Forum.

Panel:

• Ian Yates – CEO, Council on the Ageing (COTA)
• Glenn Reiss – CEO, Alzheimer’s Australia
• Carol Bennett – CEO, Consumers Health Forum of Australia (CHF)

Ian Yates opened the forum by stating that over 40% of voters in the coming election will be over 50 years old. COTA wants to see a new deal for older Australians, which is outlined in their election platform. 

COTA is campaigning for:

• an end to ageism and age discrimination in all aspects of Australian society
• access to quality health services for all older Australians
• the participation of older Australians in the workforce as long as they want or need to
• access to quality aged care services when and where they are needed
• a reasonable standard of living for older Australians 

Yates went on to make the point that unemployment of Australians between the ages of 55 and 65 has the potential to have a detrimental impact on the health and wealth of this demographic. Whilst he welcomes the Government’s “Living longer, living better” initiative, aimed at reforming the aged care sector, Yates believes that it does not go far enough. The package will provide 80,000 new consumer-directed home care packages, in a similar format to the proposed Disability Care Australia packages. “Consumer-directed” means that the consumer controls the package and can leave different services if the care does not meet their needs.  The initiative will enable simpler access to residential aged care facilities (RACFs) and easier to understand financial arrangements to allow for comparisons between facilities. The new health reform package introduced by the Gillard Government will also see the provision of more beds in RACFs.

In summing up, Yates expressed his disappointment in the two federal leaders’ lack of attention to aged care during the recent debate.  He noted that there appeared to be little difference between policies of both parties. Yates emphasised that aged care funding needs to be provided on a needs-assessment basis rather than the current quota system, which is ineffective. He applauded the consumer-directed care elements of the “Living longer, living better” package, noting consumers want to make a contribution, be independent, and exercise personal choice. Yates also believes that the “My Aged Care” online gateway, which is part of the package aimed at simplifying information and access to aged care, needs a local face. He went on to state that the Productivity Commission report that informed the new reforms was comprehensive, but that significant portions of the report’s recommendations had not been included in the final package.  Yates asserted that there was strong support amongst the membership of COTA against the inclusion of the family home in the assessment of assets for an aged care place. Finally, he spoke on the need to have an open conversation about what constitutes a good death and respecting the choice of older Australians through the advanced care planning process. 

Glenn Reiss followed on from Ian Yates, commenting on the many exciting and daunting challenges facing the incoming Government with regard to dementia care. According to Reiss, the exciting part is the potential for driving social policy change, from the current model of a “one size fits all” approach to service provision, to a new model that promotes access to appropriate care and consumer empowerment. There are 320,000 people currently living with dementia in Australia, and by 2050, 900,000 Australians are predicted to be living with dementia. Dementia care costs the health system $5 billion annually and is the biggest risk factor in aged care. Reiss asserts the need for an increase funding for dementia research. To this end, Alzheimer’s Australia has launched its Fight Dementia campaign. While the Government has commenced implementation of an aged care reform package, Reiss believes that there will be a 5-10 year period before the impact of these reforms is fully felt.  

In summing up, Reiss called for:

• Access to care based on individual needs 
• An expansion of community care, particularly for those with higher needs, so that there is a real alternative to care in RACFs
• Dementia-specific respite care
• System advocates to help in guiding consumers through the complex system and ensuring informed choices
• Assured good quality in RACFs – at the moment its variable and not up to the standard that Australians would expect
• Zero tolerance of poor quality care in RACFs – quick remediation and investigation of adverse incidents
• Increased investment in dementia research
• Robust connection and communication between Disability Care Australia (DCA) and the aged care sector to ensure that people do not fall through the cracks at the DCA cut-off point of 65 years 
• Commitment from all political parties to these reforms

Carol Bennett started her address by noting how little about aged care had been mentioned during the election campaign thus far.  Carol warned that politicians will ignore the aged care debate at their peril.  She made the point that health is more than just treating illness – it is about occupational health, safety on roads, nutrition, transport, engagement in community life, family life, and all the other factors that make up a person’s life. Our system should promote health not just treat illness.  Bennett believes that our system is currently too hospital-centric, meaning that interventions are delivered the most expensive in environment, eating up limited health dollars.  A sizable proportion of hospital-based interventions should be dealt with in the primary health care context, within the community in a more appropriate setting and at a much lower cost. 

Bennett further commented that:

• Australia’s out of pocket health expenses are one of the highest amongst OECD countries, with costs for consumers higher than in the US and UK. 
• Poor dental health is an indicator of social disadvantage in our country, and that the burden of our current ineffective system impacts disproportionately on older Australians.
• Medication expenses are an issue for older Australians, due to the inflated costs for medications being passed on to consumers from the Government.
• Consumers don’t want to be passive recipients of services and that consumer-directed control of services and treatment is imperative.
• The current health system seeks to prevent mortality at all costs even against the best interests of patients.  Dying with dignity is not accessible for many older Australians. We need to have a conversation about futile care.
• Dementia care is particularly alarming at the moment with a system that focuses on acute episodes of care, rather than on quality of life.  Treatment is based on waiting for a crisis rather than on prevention or mitigation strategies.
• There is a critical need to move away from the current funding system that encourages episodic care rather than the holistic kind of care desired by consumers. Older Australians need to be at the centre of their care.

After the statements from each panellist, Yates, Reiss and Bennett participated in a Question and Answer session.  Below is a summary of that discussion. 

• All panellists agreed that improved aged care is not just about an increase in funding, but about a reimagining of the way in which care is delivered.  They all believe that community care needs to be emphasised so that the focus is not on institutional care. 
• Consumer stories are powerful for community organisations, as it puts a human face to an issue where figures and statistics cannot.  The Alzheimer’s Australia dementia campaign is based on consumer stories. 
• There is a growing trend toward older Australians wanting to have a voice and to contribute to the effectiveness of the health system.
• Advanced care planning needs to be coordinated nationally, across all states and territories to ensure a consistent approach. 
• There is a general acceptance that the new reforms introduce a “user pays” system where those who can afford to will pay more for their care.
• There is a little known “third class” in aged care which is comprised of older immigrants who have been sponsored by their families to come to Australia but don’t have access to any health services because of their visa determination.
• Economists and consumers agree that the current system is failing lots of people as there are not enough community care packages or RACF places where consumers want to go. There is a general belief that the new reform package will go some way toward improving some of these issues.
• There is a significant net capital and recurrent funding increase to RACFs as a result of the new reforms and there is a monitoring system to ensure this results in better care.
• There is a need to bring disability care, mental health, and aged care systems together to ensure people don’t fall through the gap and that services are delivered efficiently and effectively.

Kerry Snell

Health Infrastructure Program
Consumer Coordinator