Do dementia actions speak louder than words?


Culture can be elusive, “because much of it is anchored in unspoken behaviors, mindsets, and social patterns.”

My reaction when somebody makes a “pledge” is to wonder whether anything will in reality actually change?

For example, the former Prime Minister David Cameron MP promised a ‘cure for dementia’ by 2025. That’s only another seven years to go. Actions speak louder than words?

We now know that there’s also probably more to ‘dementia friendly communities’ than an enhanced customer experience for people with dementia or their care partners.

If you say that “actions speak louder than words”, you mean that people’s actions show their real attitudes, rather than what they say.

Words can hurt and cause distress, and, yet despite the well funded campaigns for dementia empowerment and engagement, newspapers continue to be littered with headlines referring to ‘dementia sufferers’ or ‘dementia victims’.

The Alzheimer’s Society is running ‘Dementia Action Week’ next week, 1 – 27 May 2018.

On their website, the Alzheimer’s Society claims:

“Big or small actions can improve the everyday lives of people affected by dementia. Which actions have had an impact on you or someone you know? Share your story on social media to get people talking and learning about how to make a real difference.”

If you think you’re too small to make a difference, you haven’t spent a night with a mosquito, according to the African proverb.

According to much contemporary thinking, “traditional hierarchies” are based on job titles, are somewhat fixed, and define management and communication pathways. Meanwhile, “dynamic hierarchies”, on the other hand, are based on who has the most knowledge and experience in a specific context.

But the issue is that, in any system with humans in it, power relations exist, whether you formalise them or not. That means that certain celebrity speakers at dementia conferences are perceived to have more important and valid “lived experiences” than others.

We can all make a difference.

The APPG on dementia is currently calling for evidence into an inquiry into dementia and disability.

Interestingly, one of the questions is, “ What do you think are the main challenges that people affected by dementia face in day-to-day life (for example using transport or in employment)?”.

Pat McFadden MP has recently launched a scathing criticism of the Personal Independence Payment (PIP) scheme, outlining that every PIP assessment appeal in his constituency had been overturned on appeal.

He has argued that “this system is broken, inhumane at times, and in urgent need of fundamental change.”

One of the other questions asks, “ Do you feel that people with dementia are treated differently to people with other health conditions or disabilities?”

Dementia is a disability under the guidance to the Equality Act (2010).

The advice on the Royal College of Psychiatrists website indeed cites that:

“The types of ‘reasonable adjustment’ that can support people with mental health problems stay productive at work are changes that are relatively easy and inexpensive to put in place with some thought and preparation. It is also worth reminding your patients that many people without a disability or without a mental health problem need to make changes to their work patterns and conditions. Some people need more flexible working conditions because they have caring responsibilities, others with long term or fluctuating health conditions also need to make changes to the way they work.”

Examples of ‘reasonable adjustments’ might be appointing a ‘buddy’ or ‘mentor’ – someone on a similar grade and outside the usual management structure – to show the new employee the ropes and help them settle in to the workplace, or enabling a person to arrange their hours to permit them to attend a weekly therapy session.

So, a pledge made by an employer to make his business a ‘disability inclusive culture’ would be meaningful.

Arguably, there needs to be proper education and training in organisations about what ‘disability inclusive cultures’ are, and this would go far beyond the superficial marketing of dementia friendly communities.

A helpful description is here:

“ When workers with disabilities experience the benefits of an inclusive culture, they are likely to be more satisfied with the job and often correspondingly more loyal and invested in the work product and performance. In addition, a disability-inclusive culture often will provide positive results for overall employee satisfaction and productivity among workers with and without disabilities. This occurs because when an organization commits to equity, flexibility, and professional development for workers with disabilities, it frequently will generate more employer responsiveness to the individual capacities, health needs or varying work preferences of employees who may not identify as people with disabilities. In other words, inclusive cultures promote healthy and functional organizational environments.”

Recently, Finian McGrath, the Minister of State with responsibility for Disabilities, officially marked Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities at the United Nations in New York. Despite signing up to the Convention in March 2007, on the first day it was possible to do so, Ireland was the last EU country to ratify it.

It has also been reported that in Ireland, a theatre, which is based in Celbridge in Co Kildare, was founded in 2014 by theatre artist and teacher Aisling Byrne, after six years of working with people with intellectual disabilities through St John of God Community Services Liffey Region.

Byrne said the theatre’s adaptation of King Lear was inspired by the fact people with Down syndrome have a much higher chance of developing Alzheimer’s disease.

It is hypothesised by some that King Lear lived with Lewy body dementia.

Arguably, this simple example demonstrates core features of inclusive cultures.

The theatre has sought to show: “representation” (The presence of people with disabilities across a range of employee roles and leadership positions), “receptivity” (respect for differences in working styles and flexibility in tailoring positions to the strengths and abilities of employees), and “fairness” (equitable access to all resources, opportunities, networks and decision- making processes).

As you can see, it is hard to divorce the rights that arise from disability-inclusive cultures from legal rights arising from the UN Convention on Rights for People with Disabilities?

Over the years, the term “dementia friendly communities” has spawn a perplexing plethora of definitions, but surely inclusivity has to be a central feature?