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How a carer support group could provide the help you need

Providing full-time care for a loved one with dementia is no easy task, but something many Australians have no choice but to do. An estimated 1.5 million people are involved in the care of the 447,000 people living with dementia in Australia.

Whether it’s caring for a parent, a family member or a partner, carers face immense pressure in their role as they often take on the responsibility of managing their loved one’s finances, home life and healthcare program, while also trying to maintain their own social life and personal relationships. What’s more is it can be difficult to find others who understand the caring experience and it can become an extremely lonely task.

“One of the things that carers share with us is that when a loved one has a diagnosis of dementia is it can be the most profoundly isolating diagnosis,” Dementia Australia CEO Maree McCabe explains. “It’s very difficult for carers if they don’t have the support of family, friends and loved ones throughout the process.”

In addition to feelings of isolation, research shows that informal carers of people with dementia may also experience increased levels of depression, stress, poorer self-rated health and feelings of guilt or being trapped, which can impact their self-belief in the quality of the care they’re giving their loved ones. 

“Making sure that carers have support is absolutely vital to ensuring that they can continue to care well for their loved one,” McCabe explains. “Carers often feel guilt. They feel grief and they feel alone and joining a carer support group can be invaluable.”

There are various care and support groups all around Australia which allow carers to receive support and meet other people in a similar situation; receive education about dementia; provide them a space to share ideas, management tips and techniques with others; to learn about different services that can enhance the lives of the person they’re caring for; and ways to cope with feelings of stress, anger, loss and grief.

In some locations around the nation, Dementia Australia, for example, offers an array of different groups that cater to what carers need. Some focus on education, while others provide techniques that can help carers cope with their feelings and deal with challenges they may be experiencing. There are support groups for families dealing with younger onset dementia, special stress and information sessions, groups for men in the caring role to navigate their new responsibilities and other interactive groups. 

“It really depends on the type of support group that people are looking for and if there’s one available in their area,” McCabe explains.

For example, carers in Victoria can attend café-style support programs that allow them to meet and connect with other people impacted by dementia outside a clinical setting. This allows carers to share experiences and engage in mutual problem-solving and brainstorming ways to live with dementia in a casual, social environment. The get-togethers are also attended by counselling staff and trained volunteers from Dementia Australia.

It can take a while to find a support group that suits your needs, but the right group can help carers and those they’re caring for feel less distressed, less anxious and manage better. Research published earlier in 2019 by the University of California found that while comprehensive dementia care programs don’t slow the progression of dementia, they can reduce challenging responses and depression in people living with dementia and lower the distress of caregivers.

McCabe says there are many groups available that can make a significant difference to carers and she encourages carers to participate in these groups. This is definitely a journey best shared.

“Please don’t hesitate to call the National Dementia Helpline on 1800 100 500. Our team of experts is there to support you with any information that you need. We will work with you to achieve your goals and help identify what’s important to you, what your needs are, and put together a plan that will work best for you,” she says.