Be part of the change in dementia

The seventh article in this series on the topic of aged care explores issues of working with people living with dementia and their family and carers.

In this article I will focus on:

What is dementia
What types of discrimination is common with dementia and how does this impact people living with dementia
How can health professionals, such as podiatrists, incorporate small changes in their every day practice that will make a big difference to people living with dementia.

What is dementia?

Not all people with dementia are old and no two people with dementia are alike; however, there are common presentations that are associated with the changes within the brain.

Alzheimer’s is the most common form of dementia and it is associated with cortical atrophy. The most common symptom is progressive memory loss starting with the most recent memories. In the early stages sensory and motor activities are less likely to be affected.

Vascular dementia is the second most common form and may result from brain infarctions or damage to the small blood vessels of the brain. Symptoms in this form vary greatly and co-present with Alzheimer’s-related brain changes. Symptoms may include memory changes and changes to executive functions, as well as possible signs of agnosia, apraxia or aphasia. There may be symptoms consistent with a stroke, such as gait disturbances or lower facial weakness.

Frontotemporal lobar dementia reflects changes in the frontal and temporal lobes of the brain, resulting in significant changes in behaviour. Other affected areas include language skills, mood, social behaviour, attention, planning, judgement and self-control.

Lewy body dementia results in abnormal deposits of the naturally occurring alpha-synuclein protein in the brain. People may have issues with thinking, reasoning and movement difficulties. They may also have postural hypertension, shuffling gait and trouble initiating movement.

The term ‘neurocognitive disorder’ is also used to describe dementia. But it is important to understand that brain changes are only part of the picture and many people with dementia can participate in meaningful lives for years with tailored support.

There are many risk factors associated with dementia which can develop over a lifetime and can be associated with a range of lifestyle habits. Factors that contribute to poor vascular health (e.g. high cholesterol, smoking, inactivity and obesity) also contribute to poor brain health.

Dementia and discrimination

A recent survey undertaken by Dementia Australia in 2021 found that 65 per cent of people living with dementia believe that discrimination is common or very common.

The fact that many people with dementia (and many families that support people who have dementia) expect to be discriminated against means they are less likely to identify or advocate for their basic human rights.

The recent survey found:

Families and friends dropping off and people with dementia report they are less likely to be included in social occasions and engagement.
Health professionals communicate only with the person’s carer, assuming that the person with the diagnosis is no longer able to contribute to the conversation or make decisions for themselves.
A widespread assumption that people living with dementia are experiencing progressive decline and therefore they are not offered the same access to wellness, enablement and reablement services.
People who share their diagnosis with their employers are less likely to receive the same level of support to continue work or to transition out of work compared to others with chronic disease.
Carers of people living with dementia are less likely to receive support from employers and have increased risk of financial and mental health impacts.

Alarmingly more than 90 per cent of professionals, volunteers and people not living with dementia felt that those with dementia are likely to be treated differently once they are diagnosed.

The impact of this type of discrimination can be profound and can impact all facets of a person’s life, including the way that they engage within their community and the types of services, including healthcare, they access and receive.

“I think most discrimination is unintentional, people just do not know how to deal with it” (Carer)

Discrimination is also likely to result in:

People not disclosing their fears of dementia or diagnosis or being reluctant to be diagnosed. This limits the ability for individuals to receive an early diagnosis and access appropriate early interventions to delay or slow the progression. It also increases the risk of self-isolation and poor mental health outcomes.
Not feeling empowered to speak up when they feel their rights are compromised.
People and their families experiencing fewer treatment options and poorer health outcomes.

“I want to be seen for what I can do rather than for what I am not able to do!” (Person living with dementia).

How can I make a difference?

Health professionals can receive dementia-specific training to increase their understanding on how to be more inclusive and empower their clients who are impacted by dementia. This can assist in improving access to services, information and support which can all help to maintain their independence and functional capacity for as long as possible.