Being dementia friendly is about considering the human experience of dementia rather than just the biological condition. It means recognising the person first, before the disease. Dementia is just one part of the whole person and their experience of life. However, there is a lot of information that conflicts with a friendly understanding of dementia. There are many stigmas and myths associated with the disease and those that have it. These stigmas and myths often become barriers to seeing and understanding the person living with dementia and can lead to unfavourable outcomes for the person.
Being dementia friendly can challenge some of the ways others think, perceive and feel about the disease and a person living with it.
Dementia friendly initiatives:
Reducing Stigma
There are many stigmas associated with dementia that can hinder people living with the disease, as well as their families and those working to support them. Stigmas negatively impact service structure and delivery, care, and quality of life for all involved.
When a person becomes stereotyped, ‘stigmatised’, it becomes difficult for them to be perceived as anything but that stereotype. They are then perceived through the lens of that stereotype and labels are created within that perspective. The dehumanising of people often starts with stigma.
The removal and dispute of these stigmas is an important step to improving the quality of life for people with dementia, and is something Alzheimer’s WA strives to achieve as one of its key goals.
The table below outlines common stigmas associated with dementia, and the negative impacts these may have on people living with the disease.
Stigma | Potential impacts for person living with dementia |
People with dementia cannot take responsibility for self or other. | Feelings of disempowerment, frustration, disenabling, loss of autonomy. |
Dementia equals suffering. | People may become disheartened after being diagnosed, believing it is not possible to live well with dementia. |
People with dementia do not understand what is going on around them. | Could leave person feeling useless, frustrated, with a sense of no control. Reduces opportunities provided for participation in life. |
People with dementia are helpless and need someone to take over things for them. | Can be left out of conversations, be ignored, excluded. Could leave the person feeling isolated. |
People with dementia are not really ‘here’. | They will likely experience feelings of not being seen, understood or acknowledged, being constantly looked over. |
If you have dementia you will become aggressive and have ‘behaviours’. | May lead to people being misunderstood just when expressing themselves, and being shunned for certain ‘different’ behaviour. |
If you have dementia your personality will change. | Changes in the person may be misunderstood, and regarded only as part of the disease, not who they are as a person. |
People with dementia do not have capacity to make decisions for themselves. | The person may experience others making decisions about them without them, making them feel helpless and ‘trapped’. |
People with dementia do not understand their reality as it actually is. | People may assume their realities are different, making it hard for people with dementia to try and relate to others. |
Someone with memory loss must have dementia. | While memory loss is common with dementia, there are many reasons for memory loss. Assuming memory loss is caused by dementia could be hurtful and disheartening for people. |
Anti-psychotics and other restraints are needed for what is called ‘challenging behaviours’. | The person may be medicated inappropriately and the impacts of this can be devastating to their physical and emotional health. |
People with dementia revert back to being a child. | Being treated as a child is embarrassing and degrading, and can lead to people not being taken seriously, or being ignored. |
There is no hope if you have dementia. | This can lead to pessimism and hopelessness, if people with dementia feel all those around them believe they have ‘no hope’. |