The Oxford dictionary definition of stigma is ‘a mark of disgrace associated with a particular circumstance, quality, or person’. The Collins dictionary states ‘If something has a stigma attached to it, people think it is something to be ashamed of’.
Whilst these are stark statements there is still a great deal of stigma attached to dementia and people diagnosed with dementia often feel ashamed of their diagnosis (including Mum).
There are many reasons why dementia is still so stigmatised, from a lack of public awareness and low levels of understanding through to fear. Most of us fear dementia. And the brutal truth is that we fear dementia because the public perception is that people with dementia end up as ‘empty shells’, unable to recognise anyone, who end up completely dependent on others for all aspects of living, who end up a burden.
But the stigma of dementia is a self perpetuating problem. Nobody wants to discuss the reality of the later stages of the disease because they fear it. However if we don’t discuss it, we will never improve people’s understanding of what can be done to help and support people to live as well as they can with dementia. And therefore the public’s perception will remain one of an ‘empty shell’.
Throughout Mum’s illness I have come to understand that while someone in the later stages of dementia will need help with most aspects of daily living, if the relevant understanding, care and support is in place, they can still do some things for themselves, still participate in the things they enjoy, still maintain their dignity.
Why there is still a stigma surrounding dementia?
There is no doubt that dementia is a horrible disease that strips away memories, not only memories of loved ones, of a life lived but it also takes our memory of how to do things. Eventually it takes away the ability to live independently, to communicate effectively, to make the most basic choices, such as what we want to eat. But if we don’t talk about the more uncomfortable aspects of dementia, we will never remove the fear or the stigma. So below is my view on why there is still so much stigma attached to dementia and what can be done to try and change people’s perception.
Stigma of ‘lunatic asylums’ and mental illness generally
The stigma attached to dementia also applies to all types of mental illnesses. Until fairly recently ‘lunatic asylums’ were commonplace and they were where people with any type of mental illness, including dementia, went if they needed care. The image that lunatic asylums create is one of people in straight-jackets, electric shock treatments and other barbaric practices. And while thankfully these places no longer exist, to Mum’s generation, they were the only places available to people with mental health issues and they still remain very vivid in their imaginations.
Until recently, many of the symptoms of dementia and the associated behaviours were described in negative terms.
Words such as ‘wandering’ used to describe someone who does a lot of walking suggests ‘aimless / thoughtless wandering’ and can add to the stigmatised view that people with dementia have no purpose. The term ‘challenging behaviours’ used to describe behaviours such as aggression or restlessness adds to the stigmatised view that people with dementia are often difficult and unreasonable.
Thankfully things are starting to change and people are encouraged to simply say ‘walking about’ and ‘changes in behaviour’ in a step to try and reduce stigma. But I think it is important for people to also understand that there is nearly always a reason for these behaviours. For example, people who walk a lot may be looking for something such as the toilet, they may be feeling anxious or they may be walking to relieve boredom.
People with dementia can sometimes be aggressive, argumentative or difficult, even though it was never in their nature to do so before they became ill. Because someone with dementia is no longer able to apply rational thought, any out of character behaviour becomes more difficult to resolve, making people uncomfortable and/or embarrassed.
However the key thing to remember when this happens is that there is nearly always a reason behind the behaviour, such as fear, embarrassment, pain or hunger. A reason that they are no longer able to communicate, causing frustration. Try and get to the root cause of the problem, look out for common triggers that may help you understand what is wrong. Avoid confrontation and if necessary try and distract them onto something they enjoy.
Most people associate memory loss as one of the main features of dementia. Whilst this is true for some types of dementia, such as Alzheimer’s disease, memory loss isn’t always one of the earlier symptoms. As each type of dementia affects a different part of the brain, the earlier symptoms a person experiences, will depend on the type of dementia they have. However, regardless of the type of dementia, memory loss will become an issue as the disease progresses.
Forgetting our loved ones is probably one of the things about dementia that we fear the most. Together with the fear that if we forget them, they will stop visiting, hiding behind the “what’s the point if they don’t even recognise me” excuse.
But the most precious, and I have to say surprising, aspect of Mum’s illness was that I never felt that she forgot who I was. Yes she forgot my name, yes she didn’t know I was her daughter, but she always recognised me as someone she knew and loved.
So one of the main misconceptions about dementia, that Mum would forget me, never happened. Although I was in the lucky position where I didn’t have to work, which meant that I could consistently spend time with Mum, I believe that if you remain a constant in their life they will continue to value your visits.
People with dementia struggle to communicate as the disease progresses. Some have fluent speech but without meaning while others have little or no speech.
The struggle to communicate leads to the perception that people with dementia have nothing meaningful to say. As a result people with dementia are often dismissed, ignored or overlooked. This can lead to a loss of confidence and reduced well being, making them more likely to withdraw from social interaction perpetuating to the ‘empty shell’ perception.
But in my experience, people with dementia still have thoughts and opinions and we must find ways to help them express themselves. Never talk over or through someone as though they are not there and don’t be embarrassed if you are holding a conversation which makes no sense. Like everyone, people with dementia like to talk and feel as though they are been listened to.
As dementia progresses people start to need more help with the tasks of daily living. As a result they lose control of the most basic life choices, such as what to eat and when.
This is another aspect of dementia that people fear, that they will become completely reliant on others. They fear that people may take advantage, or worse still, that they may be mistreated. Personally Mum’s vulnerability was one of the things that scared me the most, that she would be mistreated and wouldn’t be able to stand up for herself or raise the alarm.
But the only way to reduce the risk of this happening is to raise awareness so people can better understand the symptoms of dementia and how to manage them.
People living with dementia do find it more and more difficult to maintain personal hygiene. This can lead to people looking more unkempt than usual, which some people find uncomfortable and adds to the stigma that people with dementia no longer care about their appearance.
But it’s not necessarily that they no longer care. There are many reasons why personal hygiene becomes more difficult, including a lack of awareness of the last time they took a bath (or the need to) through to being unable to get into/out of the bath. It is also likely that they will need help with bathing which can cause embarrassment.
There are things that can be done to help someone maintain their personal hygiene such as making sure the water temperature is comfortable and making sure that you have everything to hand like a warm towel to minimise the amount of time someone is naked. You can also consider alternatives such as a sponge bath or using dry shampoo. However as the disease progresses, I think there has to be a general acceptance by others, that personal hygiene becomes difficult and allowances made.
It is an almost inevitable fact that people in the later stages of dementia will need help with toileting leading to a stigmatised view that people with dementia can no longer wipe themselves and end up wearing disposable underwear.
Going to the toilet is one of the most personal things that anyone does and needing help would embarrass and horrify any of us. But I found with Mum, that you can help someone and still maintain both your dignities. One of the most important things is to recognise that someone needs to go, as they may no longer be able to communicate the need or find the bathroom, which can lead to accidents. Secondly, easy to remove clothing means they are more likely to be able to manage themselves or it is easier for you to help them. Don’t rush them and be ready to gently remind them of the steps and hand them toilet roll if necessary. And finally try not to be embarrassed. Although easier said than done, if you are embarrassed, they will be and then you may experience behavioural changes.
And as for disposable underwear, people with very advanced dementia may wear them as a precaution, but in my experience they would still prefer to use the toilet with support.
While Mum was living in Rivermead care home, I came across examples when people who obviously needed the toilet weren’t supported resulting in an accident and although the person living with dementia was not at fault, it still adds to the stigma of dementia.
The impact of stigma
The stigma of dementia is significant not only to those living with dementia but also their family (stigma by association). Stigma also makes us all fear dementia more than any other disease.
Below is how stigma impacts on those living with dementia:
- Stigma stops people from acknowledging their symptoms.
- Makes people more reluctant to obtain an early diagnosis (or any diagnosis at all).
- Without a diagnosis it limits access to available treatments.
- Stops people from obtaining the help and support they need.
- Prevents planning for the future, including where they would like to live in the later stages of the disease.
- Stops people from participating in clinical trials, needed to improve the lives of those living with dementia and ultimately find a cure.
- Stigma also causes individuals and organisations to behave in ways that are unhelpful, emphasising the symptoms of dementia, rather than supporting the abilities that people with dementia have.
- Results in a loss of friendships / change in relationships
- Causes a loss of confidence and reduced well being.
Stigma by association
When stigma affects the families of those living with dementia, particularly the primary caregiver, it is known as stigma by association.
Examples of stigma by association that family caregivers may experience include:
- Embarrassment – Family and friends may find it difficult to deal with some of the more challenging symptoms of dementia such as aggressive behaviour or incontinence.
- Isolation – This can lead to isolation as carers also become excluded, as other family members and friends try to avoid social interaction with those living with dementia.
- Support network – As a result carers may experience a loss of their support network.
- Fear – Carers may worry that a lack of personal hygiene may be mistaken for neglect.
- Carers and other family members may also struggle with feelings of shame, guilt and anger resulting in increased feelings of caregiver burden.
Mum & Stigma
Mum herself had a very stigmatised view of dementia and it definitely prevented her from acknowledging her symptoms, getting a diagnosis and obtaining the help we all needed.
During Mum’s illness I also came across many examples of stigma including:
- People talking to her like she was a three year old or talking over or through her like she wasn’t there.
- Friends who slowly drifted away and stopped visiting.
- People commenting because Mum hadn’t washed her hair or her clothing wasn’t coordinated.
- People who commented that they were surprised that Mum had dementia because she was a well educated teacher!!
- In the later stages of the illness, when Mum did struggle to communicate effectively, I had more than one person say “but your Mum has effectively gone now”. Well she hadn’t gone but it demonstrates how some people view the quality and value of life of those living with dementia.
I also saw the impact stigma had on Mum and it is one of the reasons why I am so passionate about raising awareness. Nobody should stigmatise dementia because anyone of us could get the condition (it doesn’t care about intelligence or strength of character) and if you don’t, it is almost certain that someone you know will.
To help raise awareness and reduce stigma I have created a range of t-shirts, sweatshirts and other products with the following design. Click here to visit the ‘Just Be Dementia Friendly’ products page.