Throughout the COVID-19 pandemic, a growing number of people have considered withdrawing their family members from residential aged care facilities in a bid to minimise their risk of viral exposure.

For relatives or carers of people living with Dementia, this decision was more challenging. Would their loved one get the care they need without the constant watch of professionals? Would they be safe living in a non-clinical environment?

Dr PK Loh, Adjunct Associate Professor at Edith Cowan University says that, while there is no right or wrong answer, there is a checklist for people faced with this dilemma – or the healthcare professionals advising them – to consider.

“There is a temptation to make a decision of passion, when faced with a dilemma like this,” Dr. Loh said ahead of the National Dementia Conference, hosted by Informa Connect. “When fatalities were surging in residential aged care facilities during parts of the pandemic, family members wanted to withdraw their loved ones and care for them at home. In doing so, they may have not considered various risks exclusive to their home environment.”

Infection prevention

The first risk to consider is the immediate physical health of the person living with dementia. While the risk of COVID-19 infection has, at times, been significant in aged care facilities, it may be more so at home; particularly multi-generation households, where other dwellers have active social lives, attend schools, or work in high-risk settings.

“I can understand from a relative or carer’s perspective that bringing a loved one home when aged care infections are surging feels like the right decision. However, infection prevention and control measures in aged care facilities are stringent, and may not be so in households,” Dr. Loh said.

“Relatives should assess the risk in their own homes. Are all household members vaccinated? Does everyone execute hygiene measures thoroughly? And are there places to isolate if one household member becomes sick, for example?”

Other physical safety risks

People living with certain stages of dementia may be at increased risk of injury if their environment is not properly secured. Residential aged care facilities have reasonable safeguards in place, but households may be more hazardous, Dr. Loh warns.

“Seemingly harmless items, like hot taps, can cause serious injury for people living with more advanced stages of dementia,” he said.

“It is important relatives thoroughly assess their home environment, particularly if there is an open-plan layout where the person living with dementia can easily access high risk appliances or utensils. This is especially important if the primary carer has to divide their attention with children, for example.”

Mental wellbeing

People living with dementia are susceptible to psychological distress and may require high levels of tailored support. While it is possible for family members to match the level of care provided in an aged care facility, not everyone may feel equipped to respond appropriately when distress arises.

“It is important that people living with dementia have their psychological, social and emotional needs met,” Dr. Loh said. “If you withdraw them from an aged care facility and bring them home, will that be acceptable for your spouse and children; and will you be able to provide a dementia-friendly environment? You may have the experience or inclination to do that, but would the rest of your household?”

Complicating this matter, it is not uncommon for previously multi- or bilingual people to revert permanently back to their mother tongue, following a diagnosis of dementia. If the family or household is multicultural and/or unilingual, this could present significant social challenges.

“A person living with an advanced stage of dementia may not be able to respond to a language they previously spoke fluently. This can make it hard for them to receive the social engagement they need to maintain emotional wellbeing,” Dr. Loh said.

At the extreme end of the scale, carers should also consider the prospect of emotional duress from other household members.

“Perhaps there are grand children in the household who don’t yet have the tolerance or understanding to kindly accommodate someone with dementia. People should be honest with themselves about whether or not their home is suitable in that respect.”

Financial wellbeing

Financial considerations should also be factored into the decision. While less important than immediate health and safety concerns, they do have implications for family wellbeing.

“Caring for someone with dementia is a large responsibility and the primary carer may need to withdraw from work in the process. It is important to consider the financial consequences of this. Will the family be able to sustain this arrangement? If yes, will it affect family dynamics over an extended period of time?” Dr. Loh said.

Additionally, the family may need to negotiate with the aged care institution about how finances are managed during a leave of absence. “There may be issues with compensation and deposit reimbursement, depending on the contractual arrangements in place.”

Dr. PK Loh is an Adjunct Associate Professor at Edith Cowan University and a physician in Geriatric Medicine, providing clinical dementia care. Hear more from him on this subject at the National Dementia Conference, hosted by Informa Connect.

This years’ event will be held 23-24 June at the Crown Melbourne. Learn more and register your place here.