In last year’s World Alzheimer’s Report, ADI looked at how dementia-related stigma is defined and how we can better understand it through its relation to power, stereotypes, prejudice and discrimination. Within the report, some of the expert essays and case studies examined this further by shedding light on the complexity of stigma.
Ruth Stone, Global Communications and Digital Manager, and Sue Baker, Director of Time to Change Global, contributed the case study, ‘Challenging stigma in mental health: What we’ve learnt over 10 years’. The piece looks at progress and continuing barriers for what is so well described as “the work of a generation”.
Ending mental health stigma is the work of a generation. I think that’s the most important thing we’ve learnt since starting Time to Change more than 10 years ago.
Stigma is deeply ingrained, through cultural norms, families, workplace culture, the media and even the words we speak. It is present at almost every level of society, which means our work takes time, perseverance, and a broad, flexible approach.
by Annie Bliss, ADI Communications and Policy Manager
Globally we know that the number of people living with dementia is around 52 million and is set to triple to 152 million by 2050. We also know that every year, 82 billion hours are spent providing informal, unpaid care by family members in the home and that over 70% of this care is provided by women. (To put this in perspective, 82 billion hours is equivalent to 40 million full-time jobs).
Despite having these figures, something we know less about is young people providing this type of care.
One of the reasons we have so little information on this is that young people caring for a parent or relative with dementia do not typically self-identify as a ‘young carer’. This is common across other areas of health, and unfortunately prevents young people from accessing support services that can be crucial for them to cope with their caring responsibilities and look after their own well-being.
Vice Chair of ADI, takes a personal view on psychosocial dementia research.
It’s a sad fact
that, to date, not much in the Alzheimer research world has been considered
“groundbreaking”. The development
of cholinesterase inhibitors certainly marked some progress but, while those medications can help
with symptoms, they bear no resemblance to an effective treatment. And that’s
where we are today in 2019. Sure, there have been some research and clinical trials,
showing the usual “promising results” but these promises are often modest at
To my way of
thinking, any breakthroughs will likely come through psychosocial not
biomedical research. And when I think of quality of life breakthroughs, one
immediately comes to mind.
by Annie Bliss, ADI Communications and Policy Officer
On 24 January 2019, wrapped up in Winter wear,
I touched down on Swiss soil for my first World Health Organization (WHO) Executive Board meeting. My first observation:
“Wow, Geneva really is a functional and miniature city!” After a smooth bus
journey to the WHO building (or as it’s locally known, OMS), I was met by the
hustle and bustle of side meetings and coffee runs. ADI’s mission was to ensure
that the profile and priority of dementia remained high, with key statements
planned under Non-communicable diseases (NCD) and Universal Health Coverage
(UHC). I was also aware from discussions with colleagues of the successful
advocacy efforts of ADI and its members at the last Executive Board to ensure
that dementia was specifically identified in the 13th General Programme of Work.
We created the
series to provide a unique opportunity for the public and Alzheimer and
dementia associations to engage directly with health and social care professionals,
as well as companies involved in dementia research.
As far as we know, no other webinar has provided such ‘public to
professional’ access before.
We heard from the pharmaceutical industry, researchers and
clinicians conducting research and clinical trials, as well as primary care
health professionals supporting patients and families. Most importantly,
we heard stories of people living with dementia and their care partners about
their lived experience.
On 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).
Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025. Continue reading ““Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly”