The very mention of the word ‘dementia’ is seen as an unwelcome part of ageing, and we have a picture in our mind of someone old and frail. However, dementia doesn’t only affect the elderly – when a person develops dementia before the age of 65 it is termed ‘Young Onset Dementia’ or sometimes ‘Early Onset’. Recent figures show that in the UK that there are around 900,000 people with dementia and, as life expectancy increases, that figure is likely to rise rapidly in the next few years to 1.0 million by 2025 and to 1.6 million by 2040. [1]
To mark Dementia Action Week, May 16- 22, we focus on living with Young Onset Dementia. This article looks at how to spot the signs, the treatments and support available and in particular, its impact on both employees and employers in the workplace.
What is “Young Onset Dementia”?
It is estimated that Young Onset Dementia affects at least 42,000 people in the UK although precise figures are unknown and probably underestimated. The Alzheimer’s society point out that research into this area is scant. For younger people it often goes undiagnosed or even misdiagnosed in the early years since onset may initially seem mild or we find it hard to recognise that dementia is a real possibility in someone so relatively young. As we see dementia as part of the ageing process, we fail to recognise that it is affecting someone who in other ways appears relatively young and healthy.
Dementia is a disease where we have to get beyond the label and both understand and respect the individuals concerned. The disease is not easily clinically defined and there is no neat compartment of shared knowledge and experience. Instead, each person with young onset dementia and each family and circle of friends providing support will find very different expectations, experience and impact.
There is no one ‘cause’ of dementia and for younger people the affect or impact may be different. Certainly, the initial signs of dementia may vary.
The signs of Young Onset Dementia
Younger people with the disease are more likely to have a rarer and less recognised form of dementia, sometimes beyond the clinical experience of some GPs. Memory loss is often an early symptom in people who are older but, for those with young onset dementia, it’s more likely they will have problems with co-ordination, balance and even walking. Young onset dementia is more likely to be inherited, in around 10% of cases, which is less likely to be the case for those whose dementia starts later in life.
Perhaps most confusing of all, many younger people with dementia may not have any other serious or long-term health conditions and may indeed have been infrequent visitors to their GPs or any form of medical care. To all intents and purposes they have felt fit and well.
Treatments and support
There is currently no known cure for dementia but there are a range of drug-based treatments for the symptoms which can assist those with young onset dementia. Just as the original cause of dementia varies, so will the drug-treatment options.
Equally important are non-drug-based treatments where individuals, their families and friends can indeed make such a difference. As a society, being ‘person centred’ is so important when helping individuals and their families come to terms with dementia in providing support and care.
Dementia can change attitudes, personality and behaviours. Forgetfulness, sleeplessness, less patience, confusion, sudden physical limitations can be frightening for all concerned. There can be a sense of powerless, of losing control, and of feeling that things are inexorably slipping away. For many there is a sense of being overwhelmed by everything.
By way of support, we need to be understanding and try not to force the pace. Recognising limitations, particularly at a time when most of us imagine and hope we will continue to thrive, enjoy good health, and all those wonderful aspects of our lives, is so very tough, but important.
Young onset dementia need not mean full withdrawal. Many continue to enjoy relationships, social contact, employment and participation in sport or other activities. It is a question of personal choice and personal capacity.
Young Onset Dementia in the workplace
Some people with dementia will no longer feel able to work at all, but others feel able to work and will benefit from doing so in terms of self-worth, stimulation, financial security and usefulness. Employers must look at each case carefully and in particular make a full assessment, using the services of occupational health experts, to see what adjustments can be made to the workplace to enable that person to continue to work.
Such adjustments could be simply to provide a quieter working environment or to reduce working hours. This may enable someone to continue their current work albeit perhaps at a different pace. In other cases, the adjustment may need to be more extensive, perhaps working from home or changing the nature of the work undertaken. Occupational health is about assessing what people with dementia both want to do and can do. It is not about setting unrealistic targets; neither is it about imposing unnecessary limits.
Young Onset Dementia and employment law
Under the 2010 Equality Act, dementia would likely be classified as a disability and as such employers must not discriminate. This includes recruitment, so those with young onset dementia are free to apply for employment, or promotion. Perhaps of most relevance is the legal requirement under the Equality Act to make workplace adjustments for those with a disability to enable them, if possible, to continue to work. An excellent site to visit is the Dementia UK information site. [2]
Similarly, make no assumptions on whether someone with young onset dementia may continue to drive. Under the law, those with dementia must notify DVLA and an assessment will be made. In some cases this will not be possible, but in others it is possible for someone with dementia to continue to drive. Again, the “label” of dementia in itself is not the deciding factor, it is the capability of the individual concerned.
Wider support
Within the family and community there needs to develop a similar attitude of focusing on each individual as a person with rights and preferences. Young onset dementia certainly does not necessarily mean that someone can no longer play a part in their local community, pursue their own interests and hobbies, continue to enjoy the pub, the theatre, the sports-field. What matters is ensuring that everyone has a right to make their own choices based on their own preferences and needs.
Dementia does over time limit capability and capacity to make decisions. If it is at all possible, encourage those at an early stage of their dementia to make clear their longer term wishes to family and friends. Respecting those wishes is so important to our sense of dignity and self-worth. Losing control is hard to accept so it is all the more important for family and friends to encourage those with dementia to make clear their wishes. This can be formalised legally by a process called “Power of Attorney” where the person concerned makes clear their wishes, for end of life care, for financial decisions, and nominates family members or friends who will make those decisions for them when they are no longer able to do so but clearly based on what has been said and written at an earlier stage where there was still sufficient mental capacity to make decisions.
Governing all our actions should be our respect for each person as an individual, and our support to help them keep as much control as possible over how they live their lives. We can draw on the professionalism and experience of GPs, Consultants, local support groups, national support organisations, and Occupational Health professionals to maintain the very best possible quality of life for those concerned, beyond the label and to the heart of the matter.
Dementia Action Week
Dementia Action Week is an awareness raising campaign run by the Alzheimer’s Society. Each year, they work with individuals and organisations across the UK to encourage people to ‘act on dementia’. This year’s campaign will run from 16-22 May and focus on the theme of diagnosis. To find out more and get involved, please visit: https://www.alzheimers.org.uk/categories/campaigns/dementia-action-week
[1] https://www.alzheimers.org.uk/blog/how-many-people-have-dementia-uk
[2] https://www.dementiauk.org/get-support/legal-and-financial-information/employment-and-young-onset-dementia/#:~:text=People%20in%20the%20early%20stages,tasks%20may%20feel%20more%20difficult
