Why dementia is the most feared diagnosis

It is reported that dementia is the diagnosis that people fear the most, more so than cancer, heart disease and stroke. Some of the main reasons people offer as to why dementia is to be feared so much, is a belief that after you are given a diagnosis of dementia, you wouldn’t be able to:

• Drive your car
• Go for a walk
• Have conversations and socialise with friends
• Make a hot drink or a hot meal

People also fear that they would be considered “mad” and that they would lose friends or relationships and their home. These myths and misunderstandings support people’s ideas that dementia is just part of the ageing process or that after a diagnosis of dementia you are no longer a person and that “nothing could be done”.

They myths and misunderstanding around dementia are so prevalent in our society that they can prevent individuals and families seeking help and support and sometimes health and social care professionals have these beliefs too.

Occasionally health and social care staff do not refer people to Memory Clinics because they believe that dementia is part of ageing and people in older age have had a ‘good innings’.

Sometimes health and social care staff feel it would be of no benefit that someone would be diagnosed with dementia as there is no treatment. So why upset them by telling them?

People living with dementia

However, people living with a diagnosis of dementia, (often older people, as the risk of dementia does increase with age) rarely complain.  It is suggested that, as the majority of this age group have grown up during or after the Second World War and before the development of the welfare state, they may well have previously experienced worry and/or poverty in their life. They are, therefore, often grateful for any help they receive.

Bowling (2001) suggests that this is a law of “inverse satisfaction”, wherein older people may be inclined to agree with the “fair innings” principle in that they are “lucky” in comparison to their parents.

Is dementia a condition experienced just by older people?

Not everyone who has dementia is an older person though. For people who have early onset dementia, their problems may be completely missed if we continue to believe that dementia is a natural part of ageing. Many people with early onset dementia will be of working age, with families to support and mortgages and rents to pay. They need to access treatment early as delays in seeking help can impact on treatment choices.

Helping people understand that having memory problems checked out is a key public health message that we need to get across to the general public and health and social care professionals. If their memory problems are related to dementia, this can open the door to treatment and support. It can help people take control of their life and plan for the future.

Recognising and understanding dementia is central to all of us living with less fear about a problem, which will touch most of us in the coming decades.