Inequalities Faced by Australians Over 65 Who Live with Dementia
By Matilda Whittaker
Introduction
Inequalities placed on people with dementia are quite evident within Australia. Dementia impairs the normality of the brain to function and can affect memory, speech, mobility, and behaviour (1). In Australia this year, it is estimated that over 384,000 people aged 65 and over got dementia (1). This brief aims to outline the inequalities that people with dementia have to go through even with current policies in place. People with dementia are often seen as incapable of participating in activities with others and tend to be excluded from social activities (4). In addition, the community doesn’t fully understand dementia and the impact that their action can have on people who are suffering from it.
Key Points:
Discrimination, abuse, and the failure to recognise dementia as a disability are all inequalities experienced by people with dementia.
Australia currently has two policies that address dementia patients, The National Framework for Action on Dementia 2015-2019 and The National Dementia Support Program, both fail to mention these inequities.
Further training and background checks on carers and support workers, combined with nationwide education programmes are needed to improve the quality of life for dementia patients in Australia.
Dementia in Australia
Dementia is the gradual impairment of the brain’s normality to function and is linked with memory loss and can affect speech through to mobility and behaviour (1). Dementia primarily occurs in those 65 years and older; however, it is not a normal part of ageing (1). Figure 1 shows a distribution of the number of Australians who have dementia. In 2021, it shows that over 211,000 aged 65 to 84 and over 173,000 aged 85 and over have dementia. It clearly shows in both age groups that the number of people diagnosed with dementia will steadily increase over the years, as it has in the past (1). In addition, there are 1.6 million individuals involved in caring for a person with dementia (4). The stakeholders involved with people who have dementia include the individual themselves, the family caregiver, community, clinicians such as doctors, nurses or other allied health professionals (6). These stakeholders all carry a crucial role in assisting people with dementia and in policy recommendations as well.
Within Australia, many existing policies cover those with dementia; however, even with these policies in place, there is still inequality within this particular population in society. Discrimination (2), abuse, having staff in aged care that are not trained to be able to assist people with dementia and having health policies that do not recognise dementia as a deadly disease within the elderly (3), are a few inequalities that become evident in some of Australia’s dementia policies.
Discrimination is prominent within those who live with dementia, to the extent that some who have dementia expect to experience some form of discrimination (2). However, discrimination can impact a person’s entire outlook on life by socially engaging with others to the services they access and receive, regardless of whether they are the person who has dementia or the carer (4). Some examples of discrimination experienced by people with dementia and their carers include; dementia sufferers being excluded in social engagements when they do not have family or friends around, health professionals not communicating with the person with the diagnosis, and only speaking to the carer, as they may assume that they are not able to contribute to the conversation or make a proper decision for themselves, and, finally, carers looking after someone with dementia being more likely to experience financial and mental health stress (4).
Abuse is another very prominent topic in people who have dementia and is a topic that has struggled to resolve through current policies. Abuse of people with dementia can occur in different circumstances, such as being abused by their own family or carers. Abuse can occur in the form of inadequate care, restraining patients against their wishes, or physically or emotional abusing patients (7). The abuse of people with dementia in aged care settings is an example where staff have deliberately assaulted residence. As a result, many people lose their human rights and dignity and inappropriate physical and chemical restraint is extensive (7).
A final topic that current policies have not rectified is that dementia is often not recognised as a disability and instead as a part of ageing (8). This can result in abuse, violence, and discrimination from the community, as while under the law they are recognised as disabled, the broader community often does not recognise it, and this can cause people with dementia to become more disabled by their environment and the views of others than by dementia itself (8).
Current national health policies that address dementia have struggled to resolve some significant issues that result in inequalities in dementia. For example, the National Framework for Action on Dementia 2015-2019 is a current policy that aims to reduce the risk of dementia and improve the overall result for people with dementia and their carers (5). The National Framework has many intents and principles, including improving community understanding of dementia, showing that people with dementia are respected and have rights and that they and their carers have access to affordable services (5). However, with topics like discrimination and abuse still very prominent within this population, it is evident that this policy has failed to address this issue during its development. This policy failure results in individuals with dementia still having to deal with inequalities such as discrimination and abuse and their carers having to deal with a portion of this as well.
The National Dementia Support Program is another national policy that aims to help people with dementia, their families, and carers (9). Their overall goals are to help people with dementia, their carers, and families better understand dementia, connect these particular groups to support services to help them manage and live with dementia and to address the health and aged care sectors to improve their response to an increased rate of dementia numbers (9). While this policy does outline some positive steps towards helping people with dementia, it is similar to the first policy outlined above, where it fails to outline goals to help reduce discrimination and abuse within this population. These topics should be a top priority when making new policies, as everyone deserves to be treated with respect and have the right to live a fulfilling life.
Policy Recommendations
Many new policies need to be implemented to help improve the inequality that people with dementia are experiencing. Three new policies that the government could implement include addressing the problem of discrimination in the community, ensuring adequate and skilled staffing in health services and aged care, and addressing abuse caused by carers or aged care workers.
The first new policy of addressing the problem of discrimination within the community is vital in helping overcome inequality in dementia patients. This problem can be reduced by educating the community about dementia and its implications on a person’s health when someone discriminates against them. Community programs could be introduced so that members of society can attend and learn more about dementia and how to properly treat someone with it, also having people with dementia come along to these programs to show the community what they are capable of and that they can be treated the same way as everyone else. Having community groups solely for dementia patients, carers, and their families would allow them to come together as a whole, educate and support each other about how they are handling the experiences of dementia. However, within the community, the problem of discrimination will most likely fail to reach the entire target audience.
The second policy, ensuring adequate and skilled staffing in health services and aged care would be highly beneficial, especially having staff who know how to treat patients with specific needs or disabilities such as dementia. This can be achieved through mandating a ratio of staff to residents. This would allow staff to have a better relationship with their patients and be able to treat their personal needs. It would also mean that staff would better understand a person’s disability and would most likely only have to look after a specific type of disability, for example, only looking after people with dementia.
The final policy of addressing the abuse placed on people with dementia by carers or aged care workers would be a critical topic. To help reduce abuse of people with dementia, an extensive background check should be in place, something similar to a working with children check, which would allow only people who have passed the checks to be able to care or work in aged care with dementia patients. Also, having carers and aged care workers participate in exceptional training equips them to recognise and address environmental, physical health, and psychological factors that may cause psychological or behavioural changes, resulting in dementia patients being restrained physically or chemically. The implementation of such a policy would require a lot of effort and time in doing background checks on current and new careers and aged care workers, and would not guarantee that there won’t be some that still decide that it is acceptable to abuse a disabled person.
For these policies to be admitted, action steps need to be implemented. These would include consultation; ensuring that all the stakeholders involved are aware and understand the importance of the policy and ensure that they are aware of the steps they need to take, having the policy being able to work around different aged care operations and carers operations, need to make sure the approach is realistic and that it is something that will not take too much time and money to be implemented and finally training the aged care facilities to implement the new policy effectively. The barriers that could prevent the successful implementation of the policy include there being a lack of monitoring and evaluating of the policy, lack of organisational knowledge within companies regarding the required skills required for it to be implemented and lack of funding and resources available for all the stakeholders to be trained effectively.
Conclusion
The potential benefit of implementing this policy is that only people who have gone through all the required steps, programs and checks would be able to look after and work with someone with dementia. It would also mean that workers would give more respect and dignity towards someone with dementia and that all carers and aged care workers would treat them as a person who is still capable of participating in life. However, the cost of the policy to be implemented nationally would be in the tens of thousands of dollars, achieved through government grants, as it would be the same policy presented across all states and territories and only altered to suit workplace needs. The side-effects would include a loss in aged care workers as they may disagree with the implemented policy. However, another side-effect is that there could be an increase in the quality of life of people in aged care and under carers roofs as less abuse would occur with regulations in place.
References
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Dementia Australia. Royal Commission into violence, abuse, neglect and exploitation of people with a disability [Internet]. Australia: Dementia Australia; 2020 Jul 31 [cited 2021 Oct 27]. Available from: https://www.dementia.org.au/sites/default/files/2021-03/Dementia-Australia-Disability-RC-Rights-and-Attitudes-submission.pdf
Department of Health. National dementia support program (NDSP) [Internet]. Canberra: DoH; [date unknown] [updated 2020 Feb 5; cited 2021 Oct 27]. Available from: https://www.health.gov.au/initiatives-and-programs/national-dementia-support-program-ndsp