Caring for a loved one with dementia is challenging at the best of times, but experts say families are struggling more than ever to provide support for their loved ones amid the pandemic.
- Waiting time for home care packages range from seven to 34 months for the highest level of care package.
- Residential aged care residents with dementia are deteriorating in the COVID-19 environment
- Dementia Action Week is from 21 to 27 September with daily tips to care for your loved one online.
National Ageing Research Institute’s director of social gerontology, associate professor Bianca Brijnath is concerned about the enormous challenges families are put under during Victoria’s hard lockdown where visits to aged care homes have been severely restricted due to infection control measures.
Some migrant families have even taken the drastic measure of withdrawing their loved ones from residential aged care homes to protect them from COVID-19 outbreaks.
But Dr Brijnath suggests that people think long and hard before changing a relative’s care setting, as pre-existing challenges that led to a relative with dementia being admitted into aged care in the first place still stand.
She says your home may not be set up to respond to those very high needs of a person who is living with dementia.
It might be quite a dangerous situation for both yourself and for your loved one with dementia.
Dr Brijnath has noticed heightened stress factors for carers and their loved one with dementia living under the same roof during lockdown.
She says the inability to provide 24/7 care at home can have serious implications for the carer and the person living with dementia.
Her advice is to try and be as well prepared as you possibly can before taking that significant step.
Be really careful, look at My Aged Care website, see what your local government might have to offer, talk to your GP in advance.
Dr Brijnath believes self-care is essential to ensure that the carer has the stamina and ability to care for a person in need.
She suggests enlisting support from relatives in addition to home-care service where possible.
Her research shows that some culturally and linguistically diverse families have been able to involve extended family members to provide day and night care for a loved one with dementia from diagnosis to the end of life.
Where there are very hard lockdowns, perhaps you can have one external family member who would be a caregiver and you can share the load a little bit.
Dementia Australia’s CEO Maree McCabe says COVID-19 has been particularly challenging not only for aged care workers, family members, but also for the over 50 per cent of residential aged care residents living with dementia.
Many are unable to see their loved ones due to restrictions at aged care facilities.
Their symptoms of dementia are progressing more rapidly and what that can mean is that they are losing the ability to do things that they were able to do.
Unfortunately, many people living with dementia will not be able to regain those functions.
McCabe observes the same disturbing trend occurring in those living at home.
For people in the community,they were once out and about doing the things that they needed to do but now they are fearful about going out.
McCabe says where aged care homes faced unprecedented scenarios of losing 80 per cent or 100 per cent of their workforce due to quarantine, relief staff do not often have the knowledge of residents and people living with dementia.
For all residents in aged care, the more we know about them, the better equipped we are to be able to support them to ensure they have their needs met.
Facilities with stringent infection control policies allow visitors to enter if they sign a declaration to confirm that they have not had contact with anybody with COVID-19 or that they themselves have not been ill or shown any symptoms.
McCabe says family members are trying their best to provide some normalcy under unusual circumstances for their loved ones living with dementia.
She suggests having regular communication and video chats with your loved one to check on their wellbeing.
Some people, if they are wearing a mask, they wear a photo around their neck with their name on it and the resident will often recognise that.
Edgard Proy is a builder based in Victoria. Despite earlier being told not to visit his elderly parents at their nursing home, he managed to convince the facility manager to let him act as a carer for his parents at least twice a week by following strict hygiene practices.
I’ve been tested three times and I’ll continue to be tested if I’m having symptoms. I have a shower every time before I go in, all different things to make sure that I am trying to keep this bug away.
Whilst living in the Australian state hardest hit by the coronavirus pandemic, accounting for 95 per cent of the country’s aged care deaths, Proy’s parents are doing well and have just celebrated their 54th anniversary with the help of a private carer.
That is funded by their life savings so we don’t have any funds in the government or anything, we just took matters into our own hands.
The extraordinary approach came about after Proy’s shocking discovery that his mother, Monica, a former aged care advocate who is living with dementia, was being heavily medicated under chemical restraint due to staff shortages at her previous nursing home.
According to the Human Rights Watch, chemical restraint was a common practice prior to COVID-19 with some studies showing that a third of people in nursing homes are on sedatives, while 32 per cent are on antipsychotic drugs on a daily basis.
Proy says his family decided to keep engaging a private carer as they have seen how Monica’s mind regresses as her dementia advances.
Now she has the mind of a toddler.If we leave her, she will just lay and she will die.
Recent data from the Productivity Commission shows that the average waiting time for home care packages range from seven months for basic level care to 34 months for the highest level of care.
Associate professor Brijnath says while many culturally and linguistically diverse families would prefer to keep their loved ones living with dementia at home, the queue to receive home-care package can sometimes take years due to systematic issues.
If you’ve got resources to privately source and secure support, I’d say definitely do that because waiting times might be that long.
Proy says he has been repeatedly labelled a troublemaker due to his insistence in providing the best care possible for his parents. Nonetheless, he has found ways to work within a rigid system.
His advice for other family members who want to physically support their loved one in residential aged care is to understand that it is within their right to do so.
If you are power of attorney, legally,you are allowed to go there, nobody can stop you.
Proy says while facilities have set rules, there is always scope for communication and negotiation.
There are over 100 diseases that may cause dementia.
Alzheimer’s Disease is the most common cause, affecting up to 70 per cent of all people with dementia.
The most obvious symptom is memory loss.
Maree McCabe urges families to keep an eye out for irregular behaviours from their elderly loved ones as these could be early signs of dementia.
It might be that all of a sudden, people start to do things that are completely out of character for them.It may be that they lose the want to do things and they can become quite apathetic and can’t be bothered.
To find out how you can care for your loved one with dementia, visit the National Dementia Helpline website for daily tips during the Dementia Awareness Week from the 21st to 27th of September.
For language support, call the national Translating and Interpreting Service on 13 14 50 and ask for your preferred service.