On July 1, 2012, I published a blog titled Dr Martin Luther King Jr asked ‘Is it right?” which I have added below, with a few edits or comments made in pink.
It is interesting to me to read it again, and for a change, I still agree with most things I wrote back then. Sadly, very little has really changed since 2012 (or since 2008 when I was first diagnosed, or since 1995 when Christine Bryden was diagnosed). So I’m looking for questions now, not answers, as if we had the answers, things would have already improved…
During September each year, many of us participate in the many campaigns referred to as World Alzheimer’s Day, World Alzheimer’s Month, Dementia Awareness Month, and Dementia Action Week.
As many have been advocating for change now for more than 30 years, we could even be forgiven for expecting it by 2020…
Worryingly, if you read the many reports or survey findings being released this month, and spend time reviewing them, it looks bleak.
It looks worse though, if you spend time reviewing similar findings or reports from the last 10-30 years, as no reports now, report any changes or improvements from past findings.
Hence, if we are brutally honest, it could be said that the past and current style of advocacy has not only been a major waste of time, it has probably also been a waste of money.
In essence, they have probably made no difference to what really matters which is the way a diagnosis is given (which is still too often less than humane), the lack of education of health care professionals about dementia, the lack of a pathway to live with dementia for anyoen diagnosed, and the lack of adequate support for unpaid families or care partners.
Stigma, discrimination and loneliness are are still the lived experience of most people with dementia and their families, and globally, the vasto number of reports and research projects continue to tell us that these ‘campaigns’ have not yet reduced stigma, discrimination, loneliness or even improved attitudes about people with dementia, let alone changed soem of the markers I mention above.
For example, and shockingly, the ADI World Alzheimers Report in 2019 findings a year ago included:
- Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia
- 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member
- Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role
- Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing
- 40% of the general public think doctors and nurses ignore people with dementia
In September 2017, Dementia Australia (DA) published the results of a survey on stigma which found that People with dementia and carers feel socially disconnected.
Three years later, it appears very little has changed, as if we review their latest survey results published earlier this week (more than 5700 people were surveyed) it is very grim:
- 74% of people with dementia feel like no one calls them anymore,
- 63& of people with dementia believe discrimination still exists,
- 80% have not been invited to social functions,
- 86% say discrimination comes from family and friends,
- 71% haven’t been included in family activities,
- 81% of family, friends and care partners said that people in shops, cafes and restaurants treat people with dementia differently,
- 90% said that people with dementia were treated with less respect than others,
- 90% of professionals, volunteers and people not impacted by dementia said people with dementia were treated differently,
- 73% said people makes jokes about a friend or relative with dementia
When surveys and reports keep confirming what many of us have been campaining for (or against) and advocating about for decades, it can only mean nothing has changed. If we keep getting the same results or findings on the same topics or issues, how can they have?
Anyway, enough rambling! Here is the blog I referred to above, first published in 2012:
Zen Gardner posted this interesting article Don’t look for answers – find the questions and in it I found this wonderful quote by Dr. Martin Luther King Jr, and thanks to VK from One World Rising for leading me to it.
“Cowardice asks the question, “Is it safe?” Expediency asks the question, “Is it politic?” And Vanity comes along and asks the question, “Is it popular?” But Conscience asks the question “Is it right?” And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but he must do it because Conscience tells him it is right.”
I [still] want my blog to be led by my conscience and from the perspective of “Is it right?” as I believe aged and dementia care needs to be shaken out of the complacency I and others who speak up so often see.
There is a world movement towards improving services, care, funding, and most importantly, attitudes towards the ageing population, and towards people with dementia of any age.
Prior to being diagnosed with dementia, and therefore having to face the prospect of entering aged care myself, I too thought it was okay and that generally speaking people were happy living there. I honestly believed services were as good as they could be, and in many ways still do [they are definitely NOT as good as they should be], but now realise it is the ‘systems’ in place, and the ‘beliefs’ of those providing the care that need changing.
How could any independent person want to live in an institution?
People who have owned, cared for and lived in their own home, who have decided often at a whim what and when they will eat at any given time, who have done their own shopping, cooking, washing and yes, even done ironing (!!), who have had a career and brought up their own children, some who have even brought up their grandchildren; how could they possibly be happy to live in residential aged care?
They may go willingly to satisfy the needs and concerns of their children, their doctors or other concerned friends or people in their lives, but I honestly cannot believe they want to go there.
But if the only option for so many is aged care, then surely if we have a conscience, then we have a responsibility to help get it right [I now also believe this is coercive, as there are no other choices for people who do need assisted living].
Many of my blogs are not what I would call popular, and when I write them, I don’t make claims to be right, but I express my views and concerns honestly, as I see things [not much has changed]. The idea of entering aged care is less than palatable, but the thought of not being able to do my own ironing is quite horrific, although I know some of you will think that is crazy.
Maybe care homes need to be set up as just that, care homes, where residents can contribute to the care and maintenance of the home, even work in the kitchens, if they are safe to do so [or with assistance], and not just sit in their rooms doing nothing, or the activity areas playing bingo. As always, there is so much more food for thought [Group Homes Australia have done just that, and are the best example of residential care I have ever seen].
The findings in these types of reports I have highlighted above only confirm why it is hard for me to believe advocacy or activism has changed anything. I know our rights are still being ignored… and feel fairly certain that advocacy or activism has made almost no difference.
Is this right? No.
Should we keep going? Yes.
Do we need to do things differently? Most definitely.