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

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