Kate Swaffer is a humanitarian and an award-winning campaigner for the rights of people with dementia and older persons globally.  In a recent blog for Brain health Awareness Month 2021, Swaffer focused on not only diet and lifestyle changes, but on anything that impacts brain health, including important issues such as the loss of hope.

In the following article which she has provided consent for us to share here, she likens the unwillingness of researchers, service providers, health care professionals, and others to embed dementia as a disability in their work, to increasing the loss of hope most people with dementia initially experience after diagnosis. Not to see dementia as a disability, and not to manage it as one, denies people with dementia a higher quality of life and their independence, as well as denying them equal access to the Convention on the Rights of Persons with Disabilities (CRPD).

Losing hope brings with it an increased sense of isolation, and of loneliness.

– Kate Swaffer

There are many negative side effects to losing hope in our lives, and this is especially true for people newly diagnosed with dementia.

It usually takes a lot of time, a lot of courage, and often, a lot of support from others living with dementia, to discover you can live a meaningful, purposeful life after a diagnosis of dementia.

The impact on our brain health on losing hope is significant, and it is not the pathology of dementia causing symptoms of distress, but more often the loss of hope. Prescribed Disengagement® is directly responsible for a loss of hope, for people with dementia and our care partners and families and friends, and can also be the reason for people with dementia taking on learned helplessness.

Loss of hope can cause many things, for example:

• Depression
• Apathy
• Feeling angry
• Feeling stressed and agitated
• Feeling helpless
• Increased risk of suicidal ideation and suicide
• Sense of isolation and increased loneliness
• Reduced (or lost) sense of purpose and meaning
• Increased suffering

If we think about this for a moment, we will see that most of these responses to a loss of hope are also currently seen by the ‘experts in dementia’ as symptoms due to the pathology of dementia. They are then labelled as the Behavioural and Psychological Symptoms of Dementia (BPSD), or as ‘Unmet needs,’ ‘Behaviours of distress,’ and so on.

It doesn't take a genius to realize that these are normal human responses to the loss of hope.

Losing hope brings with it an increased sense of isolation, and of loneliness. People start to doubt whether or not anyone actually cares about them, and start to feel invisible, as if their struggles aren’t known or cared for.

What makes this loss of hope, or hopelessness, worse is that people with dementia are still being advised there is nothing anyone can do, and to go home and prepare for ‘the end’ via community or aged care.

This is instead of being supported — including with proactive disability support — to live their best lives.

What makes this loss of hope, or hopelessness worse, is that people with dementia are still being advised there is nothing anyone can do, and to go home and prepare for ‘the end’, via community or aged care.

– Kate Swaffer

New programmes of post diagnostic care, and even new research projects, are not yet willing to tell people upfront that the symptoms of dementia are acquired disabilities and are therefore increasing the loss of hope, as well as reducing the potential for proactive support to keep living a meaningful life.

Anyone who has followed me here for a while will know I have been writing about this topic for over a decade.

The following FACTS have made almost no difference in terms of anyone, including many researchers and care providers, being willing to embed it into their research or into practice to improve outcomes for people with dementia.

• Dementia is listed as a major cause of disability and dependence on the WHO website
• In 2010, the World Health Organisation launched the updated version of the WHO Disability Assessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated very clearly on their website that dementia is a condition which is the leading cause of disability and dependence
• People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disability service)
• Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of UniSA, who were the first to do this after I was diagnosed
• It is now recognized by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
• TheInternational Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognize dementia as condition causing disabilities
• The WHO re-categorized it under the Mental Health umbrella, as a condition causing cognitive disabilities (removing it from under psychosocial disabilities)
• The Alz Society UK talk about it as a isability in their updated living well with dementia publication, although disappointingly only in terms of getting disability funding
• I could go on…

If we ignored something as important as this in any other health space, everyone would be shocked — and would stand up against it.

Whilst it may be unpleasant accepting another D-word – that dementia causes disabilities is a fact, and being advised this soon after a diagnosis potentially allows many more people to be less distressed about their diagnosis for a shorter period, and then to become more proactive about their diagnosis and to actively seek disability support, even if not straight away.

Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehab and other support to live with them. I’ve been using stroke as an analogy when campaigning for rehab for 12 years based on my nursing experience. Fact.

Loss of hope impacts brain health. Fact.

Dementia causes disabilities. Fact.

Disclaimer - The views, thoughts, and opinions expressed in this article belong solely to the author, and do not necessarily reflect those of Dementia Connections Canada Ltd.