Taking care of a family member with dementia is not only hard on the heart – it's also hard to get our heads around, says clinical psychologist Dasha Kiper.
She explores the "neurological obstacles" facing dementia caregivers in her new book Travelers to Unimaginable Lands.
Photo: Danik Prihodko
Listen to the interview
Caregivers often struggle to protect their own psychological well-being from the effects of dementia, Kiper tells Jesse Mulligan.
"What people don't realise, memory loss to caregivers – it's not just a symptom. It can feel like an active betrayal. It's somebody denying their reality over and over ... especially if you have a history with that loved one denying your reality or diminishing you in any way. Memory loss can feel very diminishing and a lot of caregivers end up feeling like they're being gaslighted."
To better understand what it's like watching someone struggling to preserve their mind, Kiper spent a year living with a 98-year-old Holocaust survivor who had Alzheimer's disease.
Not argumentative by nature but committed to trying to adapt to the man's reality, she began to take his hostility and accusations personally.
"Oh my goodness, who am I that I am arguing with a 98-year-old man who has dementia? I began to really berate myself. It really was a blow to my self-esteem and who I hoped to be."
What keeps a caregiver's brain from adapting to a loved one's cognitively impaired one is actually innate "healthy" and "social" tendencies, Kiper says.
"It's not like caring for somebody who has cancer, where it's a terrible situation but both of you know the score. It's a situation where you're losing connection… it's more than just sad, it actually takes away a lot of your healthy brain's capacity."
While sadness is the most "socially acceptable" challenge for dementia caregivers, Kiper says the experience is more defined by cognitive confusion.
Seeing people fruitlessly and repeatedly asking their loved ones 'Don't you remember?', Don't you remember?' shows how hard the disease is to adapt to.
"As social creatures, it's very hard for us when we feel that the person that we're with is not collaborating our experiences… Perhaps that person already made you feel alone and then here comes the disease and it kind of punctures the wound even more. It makes you feel that much more alone."
Dementia can be intensely lonely both for the patient and the caregiver, she says, which corresponds to emotional volatility and a lack of self-control on both sides.
"It's not just the person with the disease who has a tenuous grasp of reality ... The [caregivers'] behaviours can become as baffling and as confounding as the person who has the disease."
Travellers to Unimaginable Lands by Dasha Kiper Photo: Supplied
People with memory illnesses need reassurance and a sense of control – especially when they're emotionally distressed – yet overwhelmed carers can struggle to separate their challenging behaviour from "normal stubbornness".
It's very hard for a "healthy" brain, which is so wired for social connection, to always respond rationally to another person's contrary or confounding behaviour.
"We're not very good at letting people off the hook or having no one to blame."
Even caregivers who know it's not helpful to argue with a person who has dementia or take their behaviour personally, Kiper says it's very hard to break reactive patterns.
"Of course when someone who we've been married to for decades suddenly starts ignoring us, or who might be hurtful in ways that they've always been hurtful, how is that not going to make us feel pain?"
Self-care has become a cliché, she says, but those looking after loved ones with dementia need to have compassion for themselves – and acknowledge their own self-control is a limited resource.
"It is so important that you have time away from the person you're caring for, not just so you can fuel other relationships, which is so important because we are social creatures, but because eventually, you're going to hit a wall.
"That is not a character flaw, it's how we're wired … Our brains have limitations, even if they're healthy, and the most important thing is to nurture your mind because then you're able to have a lot more resources to deal with this incredibly difficult, counterintuitive disease.
"If you really want to do right by the person that you are caring for, you have to do right by yourself."