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Demands Of Dementia Care: Not Everyone Is Cut Out To Be A Carer

“It’s a red flag when somebody goes, ‘well, what is there to like? I mean, I lost my mom a long time ago and I don’t like this. This is so hard. Do you know how many refusals I’ve had? Do you know how many times she’s thrown stuff at me’?” said Teepa Snow, a dementia care specialist from the US. “So when somebody says, ‘I love her’ (as a reason for being a carer), I’ll say, ‘yeah, tell me what you like’.”

Teepa Snow (in blue) at the Positive Approach to Care Conference 2023 in North Carolina, United States. Photo from Teepa Snow’s Facebook post dated November 22, 2023.

By Ariane Priyanka

KUALA LUMPUR, May 27 — “Most people, when you ask them what dementia is, they see someone sitting in a chair, unable to move, having problems with saliva control, having problems with movement control,” said Teepa Snow, a dementia care specialist from the United States during an interview with Lim Sue Ann on BFM last month. 

“They see the very end of the journey with poor quality support or the very end of the journey when we’ve done all we can.”

According to Snow though, the condition can’t be painted in just one purely negative picture, because everyone experiences it somewhat uniquely. 

Dementia is a neurologically degenerative condition that is irreversible and incurable. It may manifest in a variety of ways among those who have the condition.

Rather than being a singular diagnosis, it is a condition that covers over 120 different types, forms and causes of brain change; it constitutes an assortment of symptoms that range from the cognitive to the emotional and behavioural.

The most common forms of dementia include Alzheimer’s disease, vascular dementia, primary progressive aphasia, frontotemporal dementia, and Lewy body dementia.

The specific type of dementia experienced depends on the type of brain cell damage and on the particular region(s) of the brain wherein it occurs.

Essentially, the ability of the brain’s neuron cells to communicate with each other is compromised and eventually damaged, as the neuron cells stop functioning and lose connections with other neurons, causing cerebral atrophy.

With the loss of these neural connections, the brain physically shrinks to a considerable degree, much more than it would with conventional ageing.

The gradual but constant changes that occur in the brain result in unpredictable shifts in mood, memory, thinking, and behaviour.

Not Just An Old Person’s Disease

Perhaps because the stereotypical image of dementia is usually that of patients suffering at the end stage of it, many people mistakenly think that the disease only affects the elderly.

Snow debunks this notion. “This is the challenge; there’s so much misinformation and missed information about this thing we call dementia. And people are like ‘well, it’s an old person’s disease’. 

“No, it isn’t. There are actually juvenile dementias that children can develop, there are mid-life dementias, there’s genetic, but then there’s non-genetic. So it’s really complicated, and everybody wants it to be real simple, and it simply is not.”

These misconceptions need to be challenged because it affects the way people with dementia are perceived and treated.

The way dementia is generally viewed and spoken about has an indirect but meaningful impact on the decision to get tested and seek help after diagnosis.

There’s a palpable fear of and repulsion towards the very idea of slowly becoming more dependent and reliant on others because of the stigmas attached to dementia.

“Approximately 80 or more per cent of people living with dementia are not identified in the early stage at all.

“They’re in the middle of the (condition) by the time we’re noticing that what is going on here is not ‘normal’ or ‘typical’ ageing’, so there’s a huge, missed opportunity,” said Teepa.

“And it’s a big, big number, so that’s a challenge if we’re missing it and we only notice it when it’s so obvious that it can’t be anything else.

“The problem is nobody’s asking these questions, and typically we’re in the middle of the change which is five to eight years in, before we even begin this conversation.”

The changes that occur in the brain are not brain failure, said Snow, adding, “because what’s actually happening is one part of the brain may be turning off, but when that turns off, another part starts getting active”.

“I Got Tired Of Living In The Dark”

Snow, who has friends living with dementia, said that when they initially learnt that they had the condition, their comments typically were “when I first found out, I was both relieved and terrified, and I fell into a black hole”.

“When asked what brought them out of it, some people say, ‘I got tired of living in the dark’. And other people say, ‘I found new purpose. I realised I was the same person the day before I had the diagnosis and I was doing things then, why am I not doing them now? Sometimes it’s someone around me that helps me see that there’s still life and there’s a lot of life to be lived’.”

Snow also shared that during a programme she conducted in Kuala Lumpur, someone stood up in front of over 100 people and said, “I’m living with vascular dementia. And yet when I first got the diagnosis, I thought that it was over.

“But then I realised, I had a granddaughter that was just about to be born, and my daughter said, ‘I need your help, Mom’. And suddenly my dementia was not the showstopper I thought it was.” 

One of the most popular and ill-conceived assumptions about dementia is that information-processing, as a whole, is affected in people living with dementia.

In reality, however, visual cueing becomes an easier and more natural way of processing data for a person living with dementia.

Therefore, learning how to use appropriate hand gestures, in addition to words, provides an opportunity for more effective communication.

People living with dementia can and do learn and adapt quickly, according to Snow. “My goal with care partners is to say, okay, look at the brain you have. They need cueing in ways they didn’t before, but they’re really good at following up on visual cues.”

While most people might be more accustomed to giving and receiving verbal cues, they will have to adapt when interacting with a person with dementia, she continued.

A Health And Socioeconomic Concern In Ageing Societies

More than 55 million people across the globe live with dementia, a condition fast becoming a health and socioeconomic concern in ageing societies such as Malaysia.

As one of the major causes of disability and dependency amongst older adults, dementia is not just a medical condition.

It is a life-changing condition for everyone involved as the person living with it changes chemically, structurally, and emotionally.

According to the World Health Organisation (WHO), around 8.5 per cent of older adults, aged 60 and above, in Malaysia live with dementia.

Prevalence was also found to be higher among women, those with no formal education, and those in rural areas, according to a nationwide survey.

There is a visibly disproportionate burden placed on women across the globe as more women live with dementia than men, predominantly experiencing more severe symptoms.

Furthermore, more women than men assume the mantle as informal carer or care partners to relatives living with dementia and also constitute most of the formal care workforce across hospitals, care homes and the community.

Hidden Cost Of Dementia

The impact of dementia on family members and carers of people living with dementia is equally important to acknowledge as their mental and emotional wellbeing contribute to the overall quality of their own lives, as well as the lives of the people they care for.

“There’s emotional cost, there’s financial costs, and there’s also cost that is hidden. The hidden cost is what’s happening not now, but in the future,” Snow said.

It’s what happens when care partners are so absorbed in looking after the person living with dementia, they neglect their own wellbeing, family, marriage, relationships, and jobs.

If this is not managed from the onset, Snow cautions that the stress of caring for someone living with dementia could have a direct and premature impact on the brains of care partners or themselves, and other family members.

“If that’s not being addressed, guess who else is now pre-setting their brain for dysfunction at a younger age? The care partner,” said Snow.

“And if I’m a kid watching all this, guess who’s also in distress? Because I’m watching mom and grandpa, or mom and dad fight and argue, and I don’t know what to do and I want it to stop but I don’t know how to deal with it.

“So now my mental health is being impacted, and my sense of safety is being impacted. So we have kids involved in this mix as well.”

Love Is Not Enough

Even if you love a person with dementia and/or are related to them, it doesn’t mean the role of carer or care partner should fall on you.

“I tell people quite honestly, there are some of us that are just not meant to be hands-on carers for people living with dementia. I can love you completely. I can want to support you completely. But I may not be a good match for you care-wise,” said Snow.

Besides patience and emotional endurance, practical skills are required to adequately support the person living with dementia, and to be able to respond to their behaviours and moods, whether positive or negative.

Familial bonds and piety, love and affection, or even a genuine desire to take care of the person aren’t enough to secure a strong and healthy care partnership. Conflicts, tension and tempers are bound to surface regardless of intent.

“My mother was a physical ed teacher, an amazing physical ed teacher, a remarkable cheerleading coach, but she was an absolutely miserable care provider, and so I became my grandfather’s care provider at a very young age because I was tired of the arguments. 

“I was tired of the fighting, I was tired of him trying to leave, I was tired of her being so angry at him and him being angry at her,” Snow said, sharing her own experience of taking care of her grandfather who had dementia. 

“I had to live there and it was like figuring out, ‘how do I switch this so that we can all live together and not be mad all the time, and not be scared all the time and not feel frustrated all the time’?”

She said one of the questions she would ask people who want to take on the care of a person with dementia is: “Tell me what you still like about the person you’re caring for? 

“It’s a red flag when somebody goes, ‘well, what is there to like? I mean, I lost my mom a long time ago and I don’t like this. This is so hard. Do you know how many refusals I’ve had? Do you know how many times she’s thrown stuff at me’?

“Because it turns out the human brain is built in such a way that the primitive brain, the amygdala, that survival part of the brain, if it doesn’t get something it likes every day in a relationship, it doesn’t want the relationship because it diminishes it,” Snow explained. 

“And so when somebody says, ‘I love her’, I’ll say, ‘yeah, tell me what you like’.”

Snow also stressed the importance of a substitute care partner. “So when one person needs to take a break, there’s still a partner. When the three of us are together, we find joy and pleasure with each other, but we have options. 

“And that’s what’s not the case right now, in Malaysia, any more than it is in the United States. There are too many care partners who are trapped in a relationship that’s one-on-one because the rest of the family has said, ‘I’m done, I’m out. It’s driving me nuts’.”

The Art Of Being A Carer: Managing Expectations

“What I encourage people to realise is we need to build skills in small amounts, and then we strengthen that so that we can use it when we should. We need to adapt to these changes with patience and compassion in order for a more positive dementia care culture to transpire and thrive.

“We use a lot of support. We use care partner supporting, we use people living with dementia supporting one another, we use children supporting one another. Our goal is to guide people in the support but not to say, ‘here, I have all the answers’ because that’s not how it works.”

Trying to shift away from a mindset of ‘I’m losing my person’ is hard, but necessary, especially for an ever-changing condition such as dementia, with its good days and bad days. “It’s learning the art of letting go,” said Snow, by accepting that there is no “fixing” the condition. 

It also requires being able to celebrate the good but brief moments of positive differences without expecting further and lasting improvements or consistency. “Celebrate the moment and then be willing to let it go because it was a moment.”

Using the pearl in oysters as a metaphor for late stage dementia, Snow said while what’s visible to the naked eye “is really ugly, that amazing gem is still in there, ruled by reflexes. 

“When you can get past the shell with the right support, the shell opens for just a few moments. And you see, wow, this human is still here and they still have value. And how I do what I do does matter.”

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