Dementia In Australia Report: The Numbers Tell A Story. Are They Wrong?

If you haven't "played" with Australian Institute of Health and Welfare's (AIHW) "Dementia in Australia-2021"report data, you're missing out.

No, really.

I know it's not everyone's cup of tea.

My immediate excitement however has been tampered with a incredulous sense of "I can't still believe we're here".

It felt like a deja vu echo from almost 10 years ago. That was when I last looked at AIHW Medicare Benefits Schedule reports.

I was deeply concerned then, and after reading the 2021 report, well I don't know how to really describe the frustration linked to all those lost opportunities.

So, I am grateful and thankful to start a conversation with you today so that in 10 years time we're, ok, I'm not rocking in the corner, losing more hair.

The Dementia In Australia Report 2021, released September 2021 outlines unsurprising phone book numbers:

• At the lowest projection 386,200 Australians are living with a form of dementia,
• Dementia is the second leading cause of death in Australia, behind coronary heart disease and it was the leading cause of death among women
• One in 12 Australians aged 65 and older are living with dementia, a rate that increases to two in 5 Australians aged 90 and older.

For most people, much like you, you're probably well aware of these numbers. However, what drew my attention was the distribution of Medicare Benefit Schedule (MBS) services.

The Dementia In Australia 2021 provides a lot of granularity especially related to service usage via the MBS.

Currently, the MBS benefits are payable for:

• Consultations with doctors, including specialists;
• Tests and examinations by doctors needing to diagnose and treat illnesses, including various imaging services and pathology tests provided by medical specialists;
• Eye tests performed by optometrists;
• Most surgical and other therapeutic procedures performed by doctors;
• Specified dental items
• Consultations with psychologists; and
• Allied health services for patients with a chronic or terminal medical condition and complex care needs.

Understanding Dementia: What Is The Criteria Of A Diagnosis?

Here's a quick recap on what's needed for a diagnosis of dementia.

The DSM- 5 outlines "the diagnosis of Major Neurocognitive Disorder, which corresponds to dementia, requires substantial impairment to be present in one or (usually) more cognitive domains. The impairment must be sufficient to interfere with independence in everyday activities."
        

In short, there is

1. A change in cognition (thinking and memory skills), and,
2. A change in function. A person is unable to drive, manage finances, cook, bath or dress themselves without a level of assistance.

I make mention of this as this is prequel to our Dementia In Australia story. The first pages start with..

What Are The Health Conditions Of People Living With Dementia?

For Australians living with dementia at home they collective on average had around 5.5 chronic health conditions. This was relatively stable regardless of the stage of dementia, be it mild, middle or late stage of dementia.

Do you spot any issues with the above graph? Anything missing?

Sleep disorders?

What troubled me most was the mental health and arthritis and joint related disorders in those living in Residential Aged Care (RAC).

It prompted me to recall the term "sedentary dementia syndrome" Hartman and associates reported in 2018,

"<people living with dementia> ...are more sedentary and perform less physical activity than cognitively healthy controls. This may have clinically important consequences, given the observation that sedentary behaviour and little physical activity independently predict all-cause mortality and morbidity."        

From the above information I was curious to what services people are using given the lifestyle (exercise and nutrition), environmental and social determinants of health and the known association with

• heart health, diabetes, mental health and stress oh and dementia

What Help Do People Need Who Are Living With Dementia In The Community?

For a syndrome diagnosed by a change in one or more areas of cognition and with an observable functional change, you could be forgiven to think the data was entered incorrectly.

You see, one of the earliest signs of impairment is the white ant like erosion of a person's skills in order to meet the more complex task demands of daily life, like meal preparation. Food left in the fridge, stoves left on, forgotten food in the microwave, eating habit changes, loss of weight are commonly observed and associated with changes in meal preparation skills.

The report suggests for people living in the community;

• only 50% of people require assistance with their meals.
• just over 60% need assistance with personal cares
• 67% need assistance with cognitive or emotional tasks.
• 80% need assistance with their healthcare and just behind this, mobility

So it begs the question.... What MBS Services Were Most Commonly Used By People Living With Dementia?

In 2018–19, $3 billion of health and aged care spending was directly attributable to dementia, here's how the MBS was likely spent.

GP Consultations

Our GPs provide a fantastic service to the community. More than one in three general practice patient encounters are with older people aged 65 years and over, and general practitioners (GPs) are increasingly seeing more older people in their practice.

According to the report data, GP consultations accounted for 36.1% of MBS expenditure for people living with dementia in the community. What activities are GPs likely completing?

According to RACGP,

The GPs role in dementia care includes?recognising the signs of cognitive impairment, assessment to confirm a diagnosis of dementia, management, health promotion and support for the person with dementia, and their family.        

Today the RACGP?aged care clinical guide (Silver Book) - 5th edition supports the modern practice and aims to reflect the growing desire of many Australians to remain at home as the age, especially with 70% of people with dementia living in the community.

In reviewing the Silver Book - Dementia "In Practice" it provides clinical best practice approaches to assessment, diagnosis, pathology, medication, palliative care though tends to move towards a RAC setting focus.

I was excited to see within the book:

"It should be noted that there is growing evidence that good nutrition (eg Mediterranean diet), regular exercise and social contact may alleviate symptoms of dementia and slow progression (secondary prevention). As noted in the UK’s National Institute for Health and Care Excellence (NICE) guidelines, cognitive stimulation may also be helpful. Family should be encouraged to incorporate these into the daily routine."        

However, there is no reference mentioned of what services, what health professionals, nor what funding vehicles are available to support this best practice statement. Furthermore, it's expected over 20% of Australians living with dementia, live alone.

That's 77,240 people.

I had the pleasure to attend a Dementia Training Australia event in 2021 for GPs. It addressed the recognising, diagnosing and managing dementia in everyday practice.

The clinical concerns of most attending GPs ranged from driving, assessing capacity to medication, behavioral and psychological management. Sadly, the NICE guidelines nor emerging best practice as observed in the FINGER study were not presented.

No doubt, GPs are placed at the management crossroads for people living with dementia and are influenced by the MBS design.

It's encouraging to see the Silver Book - 5th edition but, there's a genuine need to support our medical colleagues to be more literate and confident with applying emerging and established evidence. Specifically, what and who can support them to acheive their clients' goals, as noted in the Silver Book "matters most" to the patient.

Dementia In Australia and Chronic Disease Plans

On the face of it, you could be wondering why chronic disease plans represent only a small percentage of over all service distribution.

Chronic disease plans have the potential to support people living with dementia who collectively experience a group of disease which are by nature, chronic.

Furthermore, the MBS Chronic Disease Management (CDM) items establishes a positive treatment funding framework as the items

are designed for patients who require a structured approach, including those requiring ongoing care from a multidisciplinary team.        

On the face of it appears to be possibly a vehicle to assist with the Silver Book's "emerging evidence" statement, right?

But why is it so low by comparison to other service usage?

Are people being diagnosed late in their disease experience and life stage and as such their needs are possibly being met within the home care package space? Are there under referrals to multidisciplinary team to access these services?

You'll see that the allied health services attract the same percentage as does the chronic disease plans noted above.

Dementia In Australia and Allied Health

Another questions then arises. Is the funding framework sufficient within CDM items to acheive the multidisciplinary vision?

The MBS supported access to allied health via a chronic disease plan offers a paltry rebate for

a maximum of five allied health services per patient each calendar year from eligible allied health providers.         

Yep, 5.

That's not 5 dietician, 5 occupational therapy or 5 physiotherapy consultations separately.

No, that's 5 total across all disciplines, for all the multiple (remember 5.5 chronic health conditions excluding sleep) conditions that people living with dementia experience.

Due to the underwhelming opportunity of chronic disease plans in action, a person living with dementia is likely reliant on the aged care scheme in order to access allied health.

This commonly is far too late for possible secondary preventive "upstream" actions to support mental, mobility, cognition, function and broader quality of life at home outcomes.

The other side of this underutilization is the lack of service providers with sufficient skill and confidence. For example, in a study of dietitian clinical practice behaviours found that

• despite practice guidelines for?coronary heart disease ?and?type 2 diabetes ?recommend promoting the Mediterranean Dietary Pattern (MDP), which improves cardiometabolic risk markers and may prevent?disease progression ?and complications does NOT translate into routine clinical care. (Mayr et al, 2022)

Source: Mayr et al (2022)

Whilst a professionally narrow example, this may represent how allied health service are also operating within the MBS systematic design and are limited in their ability to apply best practice.

A stretch too far? Possibly. However, Mayer and her team articulate the multifactorial speedbumps impacting professional execution.

Could the MBS funding levers be one of the key carrots to resolve this as well as enhance allied health service under-utilization?

Looking at the MBS Review's implementation timeline it suggests that Allied Health aren't a priority.

Dementia In Australia and Geriatricians

This one rocked me.

Here you have the medical consultants who have significant clinical I.P. in the domain of best medical management for older Australians living with dementia yet only represent 0.6% of MBS service distribution.

I was no doubt surprised by this very small service representation.

It's Not The Data's Fault: Missing The Cognitive, Lifestyle, Mental Health and Functional Picture.

I've no doubt been puzzled by some of the data stories that have emerged from this excellent report.

Yet, it's made me further question if this is the right data picture for what our community needs. More so, it compelled me to write to you and ask you:

Do you believe this is the best expenditure of our national medical insurance scheme to enable:

1. The delivery of emerging and established clinical evidence best practice
2. The best response to community need
3. The execution of timely, precise and skilled multidisciplinary teams
4. A dignified quality of life.

Or is the MBS the right vehicle to helps us get to a better public and primary health destination for our community living with dementia?

I, no doubt, am victim to my professional emotions and biais here concerning the inequity of health services utilization and slowed implementation of emerging and established best practice.

I'd love for this data picture to change.

A change that reflects a model, a system that better meets needs of people living with dementia in Australia, their families and wider community.

What says you?

What's your opinion and where do we go next?

Love to hear your thoughts. Happy and very open to connect.

-- David Norris

#Dementia #DementiaInAustralia #MBSReform

David Norris, Senior Occupational Therapist, Founder of Occupational Therapy Brisbane and Memory Health Made Easy Podcast . Interested in learning practical cognitive health approaches for your clients? This maybe what you're looking for - Click Here

References and Sources

1. Dementia In Australia - 2021: https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/about
2. Hartman Y, A, W, Karssemeijer E, G, A, van Diepen L, A, M, Olde Rikkert M, G, M, Thijssen D, H, J: Dementia Patients Are More Sedentary and Less Physically Active than Age- and Sex-Matched Cognitively Healthy Older Adults. Dement Geriatr Cogn Disord 2018;46:81-89. doi: 10.1159/000491995 https://www.karger.com/Article/Fulltext/491995#
3. Kivipelto M, Solomon A, Ahtiluoto S, Ngandu T, Lehtisalo J, Antikainen R, B?ckman L, H?nninen T, Jula A, Laatikainen T, Lindstr?m J, Mangialasche F, Nissinen A, Paajanen T, Pajala S, Peltonen M, Rauramaa R, Stigsdotter-Neely A, Strandberg T, Tuomilehto J, Soininen H. The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER): study design and progress. Alzheimers Dement. 2013 Nov;9(6):657-65. doi: 10.1016/j.jalz.2012.09.012. Epub 2013 Jan 17. PMID: 23332672. https://pubmed.ncbi.nlm.nih.gov/23332672/
4. Dementia prevention, intervention, and care: 2020 report of the?Lancet?Commission: https://www.thelancet.com/article/S0140-6736(20)30367-6/fulltext
5. RACGP?aged care clinical guide (Silver Book) - 5th edition https://www.racgp.org.au/silverbook
6. Hannah L. Mayr, Jaimon T. Kelly, Graeme A. Macdonald, Anthony W. Russell, Ingrid J. Hickman, Clinician Perspectives of Barriers and Enablers to Implementing the Mediterranean Dietary Pattern in Routine Care for Coronary Heart Disease and Type 2 Diabetes: A Qualitative Interview Study, Journal of the Academy of Nutrition and Dietetics,2022. https://www.sciencedirect.com/science/article/pii/S2212267222000430?dgcid=author