Early Onset Dementia (EOD) – how will we deal with it?
This is a wake-up call. While not a particularly palatable one, it’s a problem we have to start recognising and discussing, because it is already here with us.
Early Onset Dementia (EOD) in our older employees, and a lack of HR awareness, skill, experience and knowledge in dealing with it, coupled with an apparent unwillingness and unease in confronting it or even discussing it (as the writer has recently experienced).
- The removal of the retirement provisions from the HRA & ECA in February 1999 was a win for mature workers against age discrimination, meaning that anyone can work as long as they like, presumably up to the point that they die, as long as they are enacting their Employment Agreement and performing their tasks effectively. As a result, our workforce is growing older than at any other time.
- A change in our socio-economic circumstances compels some mature workers to continue working in order to pay off mortgages and to amass some form of savings for retirement.
- Our standard of living and medical progress means people are able to, and have the desire to, work later in life.
- A lack of consistency in conducting regular and frank performance reviews and documenting the output, means that when HR is finally compelled to act, the required supporting evidence as to a change in performance in a documented, objective form often does not exist.
So what is EOD? (also referred to as ‘young onset dementia’)
There are several definitions, many encased in unintelligible techno-medical language, but this seems a good one for us in HR:
‘Dementia is characterised by a decline in cognitive faculties and occurrence of behavioural abnormalities which interfere with an individual’s activities of daily living’ (Fadil, H et al 2009).
Fadil also found that EOD occurs in individuals younger than 65, affecting them at the height of their career and productivity.
A Glaxo Smith Kline research article (GSK 2014) reports that the number of people living with dementia worldwide is set to treble by the year 2050, to 135 million (the World Alzheimer Report from Alzheimers Disease International suggests 277 million). Yet of the 193 countries that make up the World Health Organisation, only 13 have national dementia plans in place. NZ is one of them, via the organisation ‘Alzheimers NZ’, who similarly expect a triple increase from the current 53,000 to 150,000 by 2050.
Why is it an issue now?
It’s become an issue because the traditionalists (aged 65+) and baby-boomers (aged 50-60+) are more present in our workforce than at any other time in our past. In the US for instance, and for the first time in US history, four generations are working together side-by-side (Duarte, P 2013). In NZ, in February 1999 when the legislation changed, not much thought was given to the fact that, while some people cope with ageing magnificently and are physically fit and mentally alert right up into their 90’s, for others past 65 it’s more a case of things starting to fall off or out and the grey matter slowly decaying except for long-term memory.
Difficulty in Diagnosis
General awareness – Rosser found that ‘the high prevalence of dementia in the elderly can overshadow the importance of its occurrence in younger patients’. In other words, when we hear ‘dementia’, we think ‘old people’ and ‘retired’.
In the case of an employee becoming ill with some recognisable, visible disease, most of us in HR know the process to follow. But what happens when the disease is invisible, with a slow onset and uncertain symptoms, and where the employee may be innocently unaware, or ‘in denial’ and reluctant to disclose, like early onset dementia (EOD)?
We mere mortals in HR, and our line managers, are (usually) not trained psychiatrists and thus are not ‘tooled up’ to easily recognise the symptoms. All of us have, at some stage, walked upstairs to the bedroom and upon arriving in the right room have absolutely no idea of what it is we went there for. Or at a function, are introduced to people whose names enter and exit the brain in a microsecond. Early Onset Dementia? Probably not… at least, I hope not…
Degree of Impact
No matter what the age or circumstances, dementia is an appalling disease, affecting not just the patient but all of the people around the patient. However, EOD presents additional challenges specifically because of the age bracket:
‘A diagnosis of dementia is devastating at any age but diagnosis in younger patients presents a particular challenge…’ (Rosser M, 2010)
Remember that the expression ‘younger patients’ means those under 60.
For a person who is retired, with family close by, or who is cared for in a rest home, the impact of dementia on the person and their family is bad enough as it is. But at least they are not, at that stage, the breadwinner providing for others with dependents to look after and a mortgage. Duarte (2013) reports that the pressure on older workers to keep their jobs despite competition from younger workers is ‘exacerbated by a tough economy in which ‘retirement’ often is not financially feasible’. So for EOD to happen to an employee can have a totally different and far more serious impact, and coupled with the modern social phenomenon of older parents, the research done on EOD patients showed that: ‘By definition, all are of employable age; many might be the main earner and will often be a parent of young children’ (Rosser M, 2010).
Fadil estimates that EOD patients represent up to one-third of the total number of dementia patients. Rosser’s research showed that EOD is common from ‘the 5th or 6th decade’. So it’s a common event, and it affects those over 50 years old. Let’s do an exercise… Have a mental ‘look’ around your management team and key personnel, particularly those holding significant institutional knowledge and with important external relationships, then bring into your mind those operations staff doing complex, difficult and/or dangerous work requiring high concentration and cognitive awareness. What are your thoughts now?
What to do?
Both Fadil and Rosser found that many cases are curable (or at least treatable) with early diagnosis.
Ensure that ALL employees (regardless of age) are receiving regular performance reviews, and that any performance issues are flagged early. This can be difficult when Managers are feeling sympathetic to an older, loyal and previously productive employee, and thus are reluctant to confront the problem.
Think about and talk about dementia as just another disease or impairment that affects memory and thinking skills, and try to de-stigmatise it.
Testing & Assessment:
Set up access to qualified medical specialists in the same way you would for any other illness. This means access to psychiatric testing and assessment services. Remember that both Fadil and Rosser found that treatment is possible with early diagnosis.
Ensure that key positions have a succession plan, which will include an element of coaching and/or mentoring, and integrate within that plan a platform for collaboration and knowledge transfer.
In the event that an employee needs to go:
Difficult as it may be, there may come a time when an employee is definitely diagnosed, the prognosis is unclear but likely involves long-term absence, and redeployment into a less critical role is not possible. The employee needs to go.
In that case there are two options, medical grounds and performance grounds, keeping the concept of Good Faith in the back of your mind for both. Open, frank and frequent consultation is a major part of either approach. There should be no undue haste.
If the symptoms are serious and there is risk to personal safety and/or risk to the organisation (i.e. in faulty decisions), suspension on full pay is indicated to minimise risk.
The medical grounds approach (assuming it is provided for in the Employment Agreement) requires specialist diagnosis that is paid for by the employer. Using impartial experts, the intention is to establish with as much certainty as possible whether it is practical for the employee to remain in the job – to enact the Agreement – and that will come down to a prognosis as to recovery, the level of recovery, the time taken to recover, medication required that might pose a risk to safety, and the risk of relapse. The employer makes the decision based on the totality of that information.
The reason for termination is ‘frustration of contract’, not the illness or disability:
‘The employer must be careful not to take action on the grounds of the employee’s illness or disability because that would be unlawful discrimination under the Human Rights Act’. (Rudman, R 2013, p. 287)
Dismissal needs to meet the test of ‘justification’ as per ERA (s 103A):
‘The test is whether the employer’s actions, and how the employer acted, were what a fair and reasonable employer could have done in all the circumstances at the time the dismissal or action occurred’ (CCH ENZEL 2013, P. 135)
The performance grounds approach looks simply at the employee’s output versus the agreed requirements of the job, and involves specific evidence of non-performance, a formal warnings process with a support person, opportunity to improve, and at the end, a determination of whether the employee has, or can, meet the requirements of the job. Elements of the medical grounds approach can be used as well, since if the employee is not receiving treatment, have they fairly had the opportunity to improve?
The spirit and philosophy of our approach and decision-making should be, from start to finish, embodied in this question: ‘Can we recover this situation and bring this employee to full productivity again, without unreasonable cost or time, and without risk to their safety, the safety of others, and the organisation?’
Alzheimers NZ Inc 2014, ‘Dementia, A Strategic Framework Launched’, Alzheimers NZ Website, 10th April 2014 http://www.alzheimers.org.nz/information/latest-news/340-framework
CCH 2013, ‘Essential New Zealand Employment Legislation’, 3rd edn, CCH New Zealand Ltd, Auckland.
Duarte, P 2013, ‘What’s a Succession Plan For An Ageing Workforce?’, Workforce Online, January 7th 2014, http://workforce.com/articles/20190-whats-a-succession-plan-for-an-aging-workforce, viewed 27th January 2014.
Fadil, H et al 2009, ‘Early Onset Dementia’, International Review of Neurobiology, Vol 84 Neurobiology of Dementia (ed. Minager, A), Vol. 84, Chap 13, pp. 245-262
Glaxo Smith Kline 2014, ‘Neuroscience on the brain’, technical article on GSK website,
http://www.gsk.com/explore-gsk/business-strategy/neuroscience–on-the-brain.html viewed 8th February 2014.
Rosser, M 2010, ‘Diagnosis of Young Onset Dementia’, The Lancet, Neurology, Vol. 9, Issue 8, August 2010 p. 763
Rudman, R 2013, ‘New Zealand Employment Law Guide’, CCH NZ Ltd, Auckland.