How To Care For A Family Member with Dementia
Although Dementia doesn’t directly harm a family member, the stress can strain relationships and test one’s ability to care within the family.
A lot of people tend to confuse Dementia with Alzheimer’s, leaving the relatives who have it undiagnosed half the time. The neurological disease can even slip past the most brilliant of doctors, who often only spot it when the family finally notices that there’s something “different.” Because it’s often dismissed as “forgetfulness,” many families miss out on the disease’s most glaring signs or are confused about how to care for their relatives afflicted with Dementia.
“It’s massively unreported,” shares leading specialist in Dementia and president of the Alzheimer’s Disease Association of the Philippines Dr. Michelle Anlacan at a health conference. “That’s why there’s not much statistics about it. It also is quite stressful for families who have to care for their relatives who have the disease.”
While maintaining contact with a neurologist, here are other ways families can care for their relatives with Dementia:
1. Assume that “common sense” may not apply to patients with Dementia.
The extra “help” and “support” our relatives with dementia need can be frustrating because we’re embedded with the concept of common sense. We sometimes instinctively think that because they’re adults then, they should know or at least function like normal adults. But we forget that Dementia is not normal; it’s a degenerative disease — their ability to associate or connect things gets worse if not treated.
As we find our patience wearing thin with our relatives who have dementia, a quiet and quick reminder that “common sense” doesn’t apply to them should replenish it. And if the ones with Dementia are our parents, remember that they dealt with all of our curveballs and shenanigans as patiently as they could. They may have not been Mother Teresa but, some people could have been more punishing with our mischief and misbehavior.
2. Remind yourself: Any rage they have towards you is not personal.
Dementia doesn’t just have a cognitive aspect but a behavioral one too, reminds Dr. Michelle. “It’s [Dementia] is not all just about memory loss. Because of their cognitive decline, their behaviors change too.”
Unfortunately, that’s where much of the burden of the care lies — from happy and energetic, our relatives with Dementia can immediately swing to paranoid and angry. The unpredictability is simply stressful. Sometimes, we don’t have to do anything; they lash out. It may feel like they’re angry at us for simply breathing in their air space but they’re just frustrated with how things are. “How come I don’t know this?”, “Why can’t I remember?”, “Why are things like this?” — all these questions are pouring in all at once and it frustrates them that they don’t have an answer.
Before we respond in kind and try to hold them accountable, remember that Dementia can easily turn our loved ones into a different person. Hold on to the memories wherein they loved you at your worst. Any stressful event — just like any Dementia episode — can turn people into monsters.
3. Help them maintain a healthy diet.
While we often give in to our relatives with Dementia because we don’t want to deal with their outbursts, diet is one boundary we have to hold. Patients with dementia don’t usually die from the disease itself; it’s sometimes because of the quality of care we give. We may support them but on the days that we’re too overwhelmed with providing them care, we overlook the small details.
Once or twice is not harmful but it’s when these moments stack up that worsen the situation.
We know it’s challenging culinary and chemistry-wise. But, if it’s for our loved ones, we would try. After all, there’s a saying that goes, “Make food your medicine. Not the other way around.”
4. Give them the power of choice.
A lot of times, we make decisions for our relatives who have Dementia because we feel that their choices are uninformed and wrong. But doing so actually worsens the situation — without having any opportunities to exercise their thinking skills, their ability to discern degrades because their brains see it as an “unnecessary function,” harming them even further.
While they can’t (and shouldn’t) make big corporate or legal decisions without proper counsel, letting them choose what to wear, where to go, and maybe what to eat — should be enough.
5. Engage them.
Similar to no. 4, engaging them through games helps. Just like how we engage our babies with little games to improve their development, playing with our relatives with dementia preserves their cognitive function or at least, slows down the damage it inflicts. We’ve seen many senior citizens and grandparents who are still sharp and lucid because they keep their minds busy.
Games like chess, crossword puzzles, and Sudoku can do the trick. Some senior citizens, who are more techie, even play video games.
Any news in Dementia to help families care for their relatives who have it?
While studies are still figuring out the mechanisms behind the brain diseases, several FDA-approved drugs for Dementia and Alzheimer’s have become available in the American market: Lecanemab and Donanemab. Both neurodegenerative diseases, according to studies, have one thing in common: it has a build-up of amyloid plaque which the drug aims to address. The drug then allows the patient to flush the amyloid out of their systems (Rabinovinci and Jagust, 2009; Klunk, 2011; Decourt, Noorda, Noorda, Shi, and Sabbagh, 2022).
However, these medicines only address the “early stages” of Alzheimer’s or Dementia (Thambisetty, Howard, Glymour, and Schneider, 2021; Alves, Kalinowski, and Ayton, 2023). It also only addresses one mechanism in Dementia, with other factors requiring deeper studies. Also, it’s currently not available in the Philippines and requires a prescription from a neurologist (Decourt, Noorda, Noorda, Shi, and Sabbagh, 2022).
But that doesn’t mean we can’t try to slow the process of our relatives losing their minds to Dementia. The last thing they need to really lose themselves to the disease.
References
Alves, F., Kalinowski, P., & Ayton, S. (2023). Accelerated brain volume loss caused by anti–β-amyloid drugs: a systematic review and meta-analysis. Neurology, 100(20), e2114-e2124.
Decourt, B., Noorda, K., Noorda, K., Shi, J., & Sabbagh, M. N. (2022). Review of advanced drug trials focusing on the reduction of brain beta-amyloid to prevent and treat dementia. Journal of experimental pharmacology, 331-352.
Klunk, W. E. (2011). Amyloid imaging as a biomarker for cerebral β-amyloidosis and risk prediction for Alzheimer dementia. Neurobiology of aging, 32, S20-S36.
Rabinovici, G. D., & Jagust, W. J. (2009). Amyloid imaging in aging and dementia: testing the amyloid hypothesis in vivo. Behavioural neurology, 21(1-2), 117-128.
Thambisetty, M., Howard, R., Glymour, M. M., & Schneider, L. S. (2021). Alzheimer’s drugs: Does reducing amyloid work?. Science, 374(6567), 544-545.
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