The Brainy Breakfast BBQ is a community initiative aimed at raising awareness and funds for dementia research through social events. It combines a healthy breakfast with opportunities for social interaction and educational discussions about brain health, targeting both individuals affected by dementia and the general public. Following a successful trial, the initiative plans to develop further resources to help others host similar events, reinforcing the importance of community support and awareness in addressing dementia.

1. Brainy Breakfast BBQ: A social
communication initiative for raising
awareness of dementia and brain health
Linda Carroli & JM John Armstrong
Harbinger Consultants
http://harbingerconsultants.wordpress.com
In March this year, Harbinger Consultants trialled an initiative in health promotion
to raise awareness of dementia. The purpose of this initiative was twofold:
Raise money for dementia research through a sponsored 50km bike ride.
We raised $600 dollars simply by setting up a facebook page and asking
our facebook network to sponsor the ride by donating $5 (or whatever
was affordable) directly to Alzheimer’s Australia.
Raise awareness of brain health and dementia through a BBQ breakfast
event at the Sandgate foreshore
Based on an action research approach, the idea of the Brainy Breakfast BBQ was
to bring people together in a convivial environment to exchange information,
share stories and generally catch up. We like alliteration so the Brainy Breakfast
could also be held as a Brainy Brunch or Brainy BBQ or combinations of brunch,
BBQ, breakfast. It was trialled with a view to considering options for rolling out
the event as a grassroots social communication and learning initiative that
encouraged and strengthened social links and prompted awareness of lifestyle
decision making. We envision the development of an online kit that anyone can
download and use to implement a hosted event.
What is Dementia?
Dementia is the term used to describe the symptoms of a large group of illnesses
which cause a progressive decline in a person’s functioning. It is a broad term
used to describe a loss of memory, intellect, rationality, social skills and physical
functioning. There are many types of dementia including Alzheimer’s disease,
vascular dementia, fronto temporal dementia and dementia with Lewy Bodies.
Dementia can happen to anybody, but it is more common after the age of 65,
meaning that age is a risk factor (Source:
http://www.fightdementia.org.au/media/key-facts-and-statistics-for-media.aspx).
However, it is important to recognise that dementia is brain disease that results in
cognitive and physical decline and will ultimately cause death.
The World Health Organisation provides the following 10 facts about dementia:
Dementia is not a normal part of ageing
35.6 million people live with dementia globally

2. A new case of dementia is diagnosed every 4 seconds
Huge economic impact; US$604 billion per year
Caregivers of dementia patients experience high strain
Early diagnosis improves the quality of life of people with dementia and
their families
People with dementia and their families are often discriminated against
Awareness and advocacy are needed
More research and evaluation is required
Dementia is a public health priority
According to Alzheimer’s Australia, Australian data reveals that:
There are more than 332,000 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
Each week, there are more than 1,700 new cases of dementia in
Australia; approx. one person every 6 minutes. This is expected to grow
to 7,400 new cases each week by 2050
There are approximately 24,700 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
An estimated 1.2 million people are involved in the care of a person with
dementia
Dementia is the third leading cause of death in Australia (the second
leading cause in women ) and there is no cure
On average symptoms of dementia are noticed by families three years
before a firm diagnosis is made.
The current situation is that the population is aging and that the incidence of
dementia is increasing. This is both in terms of numbers and percentage of people
with dementia. Consequently, this will constitute a significant strain on social
infrastructure, community capacity and family capacity, especially where in-family
care is required. In most instances, women provide care in the family and this will
impact on women’s workforce participation, including their career prospects and
superannuation. There is a need for a medical breakthrough.
Why a Brainy Breakfast BBQ?
Our family has been affected by dementia and it has been a shock for all of us.
While we were unprepared for the diagnosis of an elderly relative, we weren’t
surprised when doctors confirmed the onset of dementia. We also realised that
the key messages about brain health and dementia awareness were not reaching
us. Understandably, peak bodies, health promotion agencies and advocacy groups
can’t reach everyone.
When Harbinger Consultants decided to design a health promotion initiative that
addressed dementia awareness raising, we were not at a stage where we
considered ourselves to be ‘carers’, despite the regular assistance we were
providing to our relative. We were endeavouring to provide enough support to
enable our relative to live independently for as long as possible. We also struggled
to find accessible information via and about the aged care system, which seemed
to be unnecessarily bureaucratic. In our experience, the one-stop-shop was a
maze rather than a pathway.
The best source of information and advice to date has been friends and peers, so
we felt a peer-based health promotion event that did not directly target ‘carers’
was a good option. Rather we sought to embed meaningful discussions about
health and wellbeing, specifically brain health, in our social interaction. We
sought to normalise this kind of event or activity in our own social network in a
way that may be easily replicable among small groups. In doing so, we hoped to
address some aspects of the silence and discrimination experienced by dementia
sufferers and their families.
This event would not be focused on carers who require specific supports and
networks. It was more attentive to preparing people in our social network. If
about one in 10 people aged over 65 will development dementia then this means
that one parent of five people (with two living parents) will develop dementia. This
means the dementia of an elderly parent could impact on up to 20% of the
population who are most likely of working age.

3. In our response to this issue, we crossed a Tupperware Party with a BBQ for
health promotion. It was not a hard sell, but attentive to developing a social
communication or learning process that sought to ‘nudge’, as defined by Richard
Thaler and Cass Sunstein:
A nudge, as we will use the term, is any aspect of the choice architecture
that alters people’s behavior in a predictable way without forbidding any
options or significantly changing their economic incentives. To count as a
mere nudge, the intervention must be easy and cheap to avoid. Nudges
are not mandates. Putting fruit at eye level counts as a nudge. Banning
junk food does not.
Our nudge involved modelling and promoting positive living through nutrition,
social interaction and physical/mental activity in a culturally appropriate and
inclusive way.
What was the Brainy Breakfast BBQ?
The key element of the Brainy Breakfast/Brunch/BBQ was to deliver a grassroots
event that modelled some of the behaviours that are recommended for brain
health: nutrition, social interaction, and mental and physical activity. We decided
on a breakfast event because people who live with dementia are often more
capable and sparky in the morning – it is part of the narrative. This might also
mean that people with dementia might be able to attend and participate in the
event.
It has been noted that people who make positive lifestyle changes between the
ages of 40 and 60 can mitigate the risk of dementia. With many in our social
network middle aged, we sought to raise awareness of this and nudge people to
consider their brain health.
The event offered the following:
• Nutrition - a healthy, BBQ breakfast with vegetarian and vegan options
provided. We also tried to source food that was organic, clean, free
range, cruelty-free and/or local.
• Social interaction - there were other people to chat with, drawn from a
facebook social network
• Physical and mental activity - we were outdoors by the bay and provided
games to play while having breakfast including bocci, dominoes, horse
shoes and board games as well as a hula hoop and kites. There are also
play facilities nearby for kids.
Information about dementia and dementia research, provided by Alzheimer’s
Australia’s Fight Dementia Campaign, was distributed to participants and this
triggered informal conversation. There were health professionals present –
including a psychologist and registered nurse – who offered professional insights.
Others with family members who were living with dementia offered stories of
their experience. A couple of people played some of the games. Since the event,
contact has been maintained among participants, sometimes exchanging tips and
ideas.
Evaluation
Participants were invited to complete an online survey to help us appraise and
develop the Brainy Breakfast concept. Overall about 30 people attended over the
four hour window, and 18 people responded to the survey. Of the respondents:
Demographic
Of 18 respondents, 13 were female
Of 18 respondents, the most represented age group, being seven
respondents, was aged between 60 and 70, followed by five people aged
40-49, four people aged 50-59 and two people aged 30-39 years
Philanthrophic behaviour
Of 17 respondents, nine respondents indicated that health related issues
were their preferred beneficiaries for donations; 11 indicated social and
community and 10 indicated arts and culture
Of 17 respondents, 12 had attended, contributed to or participated in a
fundraising or awareness raising event in the last 12 months
Other than preferring to make direct donations (nine respondents),
respondents preferred to engage and participate in fundraising and
awareness raising initiatives by attending functions, social media,
distributing information and crowdfunding (six respondents each).

4. Knowledge of dementia
Of 17 respondents, 12 were impacted by dementia or know someone
who is impacted by dementia (either as a sufferer, in their family/network
or as a carer)
Of 17 respondents, 14 ranked their knowledge of dementia as general,
with one person ranking their knowledge as high and two respondents
ranking their knowledge as very high.
Of 15 respondents, eight people ranked their knowledge of dementia
research as low, three as general, two as very low and two as high
Brainy Breakfast BBQ
Most people responded to the invitation to donate and/or participate
because it was a worthy cause (11 respondents)
10 respondents indicated that the personal approach prompted them to
support the initiative
Five respondents each participated in/donated to the initiative because
dementia affected them personally and/or because not enough is being
done about it.
In terms of impact, the following graph (Figure 1) indicates how respondents have
evaluated the initiative, with the event performing over three (neutral to high)
across all areas on average.
Figure 1: Respondent evaluation of impact on a five point scale
The highest scoring areas were:
Social relevance (ranked at 4.29)
Ease of participation (ranked at 4.07)
Sharing information (ranked at 4.07)
Discussing dementia (ranked at 4.07)
Additional Comments
Thank you for the experience. I am happy to help with advertising a
future event.

5. the variety of food offered felt generous and healthy and led to social
interchanges, the display of games -even if they were not played
stimulated the mind to go home and get them out of the closet!
Creates a very relaxed environment which makes it is to interact with
those who you meet for the first time.
Unfortunately governments consider medical research a low priority and
it is appalling that citizens need to fundraise for these epidemic scale
diseases. But, aside from being disgusted, for me the 50 for 50 was an
outstanding success and great fun as well as deeply saddening.
Strong belief that steps to support positive, personalised living
environments for sufferers of dementia and Alzheimer’s are necessary.
Research and information which promotes healthy lifestyles and engages
community awareness is important.
Further development
The clear finding of the trial is that events like this meet a need for discussion and
sharing information about dementia. Based on the survey findings and our
observations of the Brainy Breakfast, the event could be developed in the
following ways:
1. Strengthen the sense of purpose by emphasising information sharing and
discussion
2. Simplify and structure the model to make it easier to follow and
implement, including options such as payment for breakfast with profits
donated to Alzheimer’s Australia
3. Develop nutritious and balanced meal menus: ‘food for thought’
4. Develop a brand to encourage identification
5. Develop social media by creating a hashtag and enable a social network
to drive future events
6. Develop resources for use by others who may wish to implement their
own ‘Brainy’ event; refine the social design element of the initiative
7. Facilitation at the event to encourage peer-to-peer exchanges such as
sharing stories, raising awareness, meeting each other and participating
in activities in a way that is sociable and inclusive
8. Ensure there are appropriate activities for children of different ages
9. Consider other options for engagement might be to learn a new skill, for
example, we all have friends and family who have craft skills and part of
the process could be about kindling new knowledge and skills
10. Involve and invite health and care professionals on a pro bono basis
Thank you
Our thanks to all those who made this trial a success. We thank you for donating
to the fundraising effort by sponsoring the bike ride (and congratulations on
donating more than $600), participating in the breakfast event and providing
stimulating company, and responding to the survey to help further develop the
idea. Your generosity has been heartening and sincere.
More information
You can make a tax deductible donation to Alzheimer’s Australia via their Fight
Dementia website:
https://www.fightdementia.org.au/get-involved/one-off-donations.aspx
Find out more about dementia and brain health:
http://www.fightdementia.org.au/
http://yourbrainmatters.org.au/
Find out more about dementia research at:
http://www.dementiaresearchfoundation.org.au/
Download the BrainyApp for iPhone or Android:
http://www.brainyapp.com.au/aus