Caring for the carer
Memory loss and changes in how our brain works can be a normal part of growing older.
Misplaced items, forgetting why you entered a room or struggling to remember a name can be frustrating regardless of age. Sometimes these small frustrations can happen more often as we get older.
For most people there’s a simple explanation – fatigue, stress, dehydration or infections can all cause memory and cognitive challenges. However, for three in ten people over the age of 85, the cause can be dementia.
While many people assume dementia is simply a normal part of ageing, it’s not. Some of the early signs of dementia include memory problems – particularly for recent events – increased confusion, difficulty concentrating, personality or behavioural changes, apathy and withdrawal and a loss of ability to do everyday tasks.
The complication for diagnosis is that these symptoms usually overlap with other illnesses, such as strokes, depression, infections and nutritional problems.
Often, it’s families and friends who are relied upon to connect the dots and push for a diagnosis. It’s also family and friends who frequently take on the incredibly important role of carer.
Heidi Dowse, Carinity’s Executive Manager Residential Aged Care, says it’s estimated that two in three people living with dementia live at home or within their community. This means that carers, particularly families and partners, play an enormous role in managing their health and wellbeing.
It’s a big job. While the role of carer is taken on with absolute love and care it’s often stressful, demanding and at times physically and emotionally exhausting.
This is why supporting carers is incredibly important – both for their own health, and for the health of those they care for.
“Carer stress can become quite intense,” says Heidi. “It’s important to look after yourself as a carer before it becomes a crisis situation.”
Signs of carer fatigue can include feeling overwhelmed, sleep difficulties, becoming easily irritated or angered, losing interest in hobbies and neglecting your own physical and emotional needs. This can lead to feelings of exhaustion, anxiety and a reduced ability to make care decisions.
There are a number of easily accessible resources and networks available to give carers the vital support they need to keep going. Heidi notes that sometimes people are reluctant to ask for help.
“Dementia Support Australia is a really good support for families at all stages. They can provide advice, strategies and counselling for partners or children of people with dementia, even in the middle of the night.”
Support will look different for everyone. Respite is available in many forms, from in-home or day services to overnight or longer term stays. Carer groups, counselling and other services can also provide assistance and understanding.
This is important in maintaining the health of the carer, as well as their ability to care effectively; as the saying goes, you can’t pour from an empty cup.
Regardless of current health needs, Heidi recommends families develop a long term care plan so that decisions can be made before a time of stress or crisis. Reaching out to your GP, support services or care providers can be a good place to start.
“I think some people are often a bit nervous about contacting support agencies, but they can assist you along the journey and help you think about options.”
“It could be that the person living with dementia can stay at home, but their carer needs a break now and then to recharge. Support services can help you navigate this and determine what works for your family. Carer fatigue can be a really significant source of stress and shouldn’t be ignored.”
Over time, the needs of the person living with dementia and the health of carers can change. Medical or behaviour needs often mean residential care is the safest and most suitable option.
While moving to aged care can feel like a daunting move, it doesn’t have to be. According to Heidi, many residents living with dementia settle easily into their new home and routine. “It really depends on the individual,” she says.
A little planning and preparation makes the transition easier. “Making the space feel familiar is important,” says Heidi.
This can be as simple as displaying photos, using their own quilts and doonas or bringing familiar and beloved decorative items – something that is encouraged for all residents at Carinity.
For many families, it can be difficult to accept the move to aged care. It’s not uncommon for families and carers to experience a sense of grief or sadness.
It’s important to recognise that this is a normal reaction, and there are support services that exist to help families and loved ones through this emotional time.
Visiting can also be a new experience for families and the person living with dementia. Heidi recommends giving each visit a purpose.
“Going for a walk together can be a good option if that is something they’ve always done. Whatever activity you’ve enjoyed with them, it’s really important for everyone to keep that connection.”
Whether you’re partnering with Carinity staff in residential aged care or engaging home care support, reaching out for assistance can make all the difference in feeling empowered and supported in your choices as you navigate this new phase in life.
Support for carers
1800 100 500 / dementia.org.au
Dementia Support Australia
1800 699 799 / dementia.com.au
1300 747 636 / carersqld.com.au
1800 422 737 / carergateway.gov.au