Discrimination and Dementia

During this year’s Dementia Action Week, Dementia Australia released a report, Discrimination and Dementia – enough is enough, showing that people living with dementia and their carers experience discrimination that can lead to social isolation, loneliness and poor mental health. We know that COVID-19 has intensified these experiences.

Dementia Australia surveyed 900 people about dementia, discrimination and the impacts of COVID-19.

The respondents identified as either people living with dementia, family carers, family/friends of a person with dementia, healthcare professionals or people who were not impacted by dementia. BY MAREE MCCABE AM, CEO DEMENTIA AUSTRALIA

The impact of anticipated discrimination affects those living with dementia, their carers and families

How

Research demonstrates that this discriminatory behaviour impacts all aspects of a person’s life; from the way they engage socially to the types of services they access and receive and the way their human rights are interpreted.

Examples of discrimination include:

• Families and friends are dropping off, and people with dementia report they are less likely to be included in social occasions and engagement.
• Carers of people living with dementia are less likely to receive support from employers and potentially experience heightened financial and mental health impacts.
• Not disclosing their fears of dementia or a diagnosis or being reluctant to present for diagnosis when symptoms appear. This often results in self-isolation and poor mental health outcomes, as well as hindering their access to services and support.
• Accepting discriminatory behaviour because they do not feel empowered to speak up when their rights are compromised.
• Experiencing poorer care and fewer treatment options than those with other chronic diseases and not feeling able to challenge the system.

SOME OF THE SURVEY RESULTS ON DISCRIMINATION AND DEMENTIA:

• 43% of people living with dementia and 38% of family carers had postponed health or medical visits due to COVID-19 restrictions.
• 32% of family carers indicated they had experienced poorer mental health or loneliness due to COVID-19 restrictions – 37% also noticed these impacts on the person they care for with dementia.
• 34% of family carers and 30% of people living with dementia indicated their physical well-being had declined due to COVID-19 restrictions.

Extended carers, family and friends

A recent Joint Position Statement issued by Carers Australia and Dementia Australia in October 2020 also spoke about the discrimination faced, not only by people living with dementia but also by their family and friend carers.

Carers report that even family and friends of a person with dementia may feel awkward in their presence and seek to avoid them, which can cause the carer to feel embarrassed, outcast and lonely.

Fear of discrimination can exacerbate the social isolation already experienced by carers of people with dementia, as they dedicate many hours of their lives to their caring role. They also report experiencing increased anxiety, isolation and fatigue, which can lead to burnout and poorer mental health than those not in a caring role.

It is important for the mental health and well-being of carers that they receive a break from their caring role to maintain their own independence and participate in social activities.

The discrimination faced by carers is largely inseparable from the discrimination associated with those they care for, despite the World Health Organisation stating that people living with dementia, their families and carers have the right to be free from discrimination, including intended or unintended discrimination on the grounds of a diagnosis of dementia.

The need for better education

It is critical for carers of people living with dementia to be supported in their caring role and able to live lives free from stigma and discrimination. They need to be able to access high-quality respite care that is responsive, respectful and culturally appropriate, and which addresses the needs of the person they care for as well as respects the person’s individuality and promotes a good quality of life.

While there are some communication techniques that can help carers to avoid negative responses from others and some mental health techniques that can help them avoid internalising stigmatisation, the key to systemic change is better-educated communities and better-educated families. Small acts of support and understanding can make a big difference in the lives of people living with dementia, their families and carers. When communities work together to become more inclusive and support people living with dementia and their carers, they can continue to engage in activities that are important to them. A concerted effort to improve community awareness to alleviate the discrimination faced by carers of people living with dementia is key.

The Joint Position Statement issued by Carers Australia and Dementia Australia recommended

• The development of an awareness campaign – raising awareness by sharing stories of discrimination with the media as well as social posts around types of discrimination that carers of people living with dementia might experience.

• Creating additional carer support services such as respite services, community support groups, and counselling to better meet the needs of carers caring for a person living with dementia. This is particularly important for the mental health and well-being of carers.

• Providing a multi-component early intervention support program for carers of people living with dementia that combines education and training opportunities to equip carers to fulfil caring duties – with access to psychosocial interventions and supports that help to maintain the carer’s mental health and wellbeing.

• Designing a service access gateway and a holistic assessment process that recognises the importance of carer support alongside services for people with dementia.

• Ensuringagedcaresupportpackagesplace equal importance on the needs of carers and people living with dementia.

• Making mental health support services more broadly publicised, available and accessible for people who are specifically impacted by dementia.

• Information and education about people living with dementia and the caring role people undertake to be widely available on government and relevant service provider websites.

Some tips for supporting carers include:

Keep in touch

Carers of people living with dementia can often end up isolated, given the amount of time they spend caring for their loved ones. Do keep in touch through phone calls, emails, visits, letters or cards.

Don’t worry if you don’t have all the answers, you can just listen without offering advice or judgement. Make sure you ask how THEY are doing, not just the person they care for.

If you can, continue to keep in touch. Maintaining connection may be particularly important around birthdays or important cultural holidays.

Encourage them to take a break.

It can be difficult to find the time to take a break when you are caring for a loved one. Help them take a break by offering to spend time with the person they care for.

Or, if a carer you know is taking a holiday, perhaps you can offer to check in on the person they care for while they are away.

Sometimes carers of people living with dementia may feel guilty about taking a break. Reassure them it’s ok and that you are here to support them.

Help to share some of the responsibilities.

To take pressure off the primary carer, offer to help with some of the care tasks or responsibilities.

Some practical ways of showing support might be to drop off meals, do their dishes, help in the garden or do some laundry.
Ask what kind of support they would feel comfortable with and what might be helpful.

From speaking to carers of people living with dementia, we know that one of the most helpful things is when family and friends can be regular in their support. Can you offer to reliably share some responsibilities once a week or once a month?

This might be achieved by bringing together a small group of friends or family to create a roster.

Invite them to an outing or event together.

Help carers by organising activities you can do together to relax. This might be small – like bringing over a magazine they like to read or making them a cup of tea.

If you’re inviting them out for coffee or an activity, give them the option to either include the person they care for or to go along by themselves. Keep the invitation open and flexible.

Encourage them to seek support if they need it.

You can help a carer find support that works for them by becoming more educated on dementia and the services available.

You can call the National Dementia Helpline (1800 100 500) to find support groups and services in their area.

You can also register to become a Dementia Friend.

As a Dementia Friend, you will build an understanding of dementia, the challenges faced by people living with dementia, what a dementia-friendly community means to people living with dementia, and how to support people living with dementia to stay connected.

Help them to look after their physical health.

It might be difficult for carers to prioritise their own health as well as the health of the person they care for.

Cook them a healthy meal or snack, encourage them to exercise with you or help them stay social by signing up for a community class together.

Support them to maintain good mental health.

If you notice changes in mood such as sadness and grief, encourage them to seek mental health services, talk to a professional or call the National Dementia Helpline on 1800 100 500.

A little support can make a big difference in someone’s life and experience of dementia.

Visit discrimination.dementia.org.au for more information.