Caring for beloved with dementia

It can be stressful to care for dementia patient, especially when you don't know what to expect of their disease progression and how to tackle the problems that their change in behavior brings. 

Dementia is a disease of regression of the whole being - from declining cognitive function, memory losses to declining mobility and difficulty eating. Therefore, dementia-proofing can be a gradual process and what need modifications in the house very much depend on the stage of dementia. I was quite lost on what to do when I first heard that my mom was diagnosed with dementia, but slowly I learnt to cope with it.

Managing dementia

In the initial stage, memory loss and forgetfulness is the main sign with no behavioral issue. So putting  up reminder / guide signages in the house, using whiteboard to cue To-dos, preparing medications in pill boxes (AM and PM separately) and setting reminder alarms are useful.

Switch socket covers and childproof outlet plugs can be installed if the elderly like to "play" with the socket / switch. In nights that my mom can't sleep she would turn on all the lights in the house and not turn them off even when she falls asleep. (Note some dementia patients would experience "sun down syndrome".)

Installation of grab bars and slip-resistant treatment to floor tiles at home are useful to prevent falls. These modifications can be made with subsidy through the EASE program as mentioned in my previous post.

While dementia progression can be slowed with medications, there is unfortunately no cure for it. The associated behavioral issues can sometimes be controlled with medications. 

In the later stage, elderly would start having incontinence and mobility issues. I noticed that these get worse with each episode of hospital stay, perhaps due to default diaper-wearing in hospital and also prolonged period of being bed-bound. With the help of occupational therapist referral for family with low income, elderly can get mobility aid (with up to 90% price subsidy) such as walking frame, geriatric chair, wheelchair from the hospital pharmacy upon discharge.

Problems

The most stressful times for caregivers would be when the elderly moves around the house wanting to do chores but doing them all wrong. Caregivers often have to clean and tidy up after them. Dementia patients will also forget where things are kept, misplace items, forget whether they have eaten or not (keep requesting for food or empty out the pantry when left alone) and may have problem maintaining their personal hygiene.

Besides keeping most fragile and important items locked up, even the fridge at home is now under lock-and-key. Family members have no choice but to put up with the inconveniences.

Hiring a new maid to care for the dementia elderly is also a problem, because it is impossible to have a 24/7 surveillance against mistreatment. A maid might not be properly trained to care for a dementia elderly, such as dealing with behavioral issues, mobility and incontinence issues, as well as handling an incredibly long list of medications (the list grew after every hospital discharge). Thus, I am hesitant to hire a maid in order to resume full-time work, although that was the first advice from social worker and some relatives before I pointed out these problems. The only circumstance in which I would hire a maid is when I become a full-time stay-at-home mom. One option that I might consider down the road is hiring a live-in caregiver.

Respite care services are also not easy to apply for. Since COVID period, some centers have stopped offering weekend respite care service. It is hard to keep elderly engaged at home, often it's just sleep or TV (when movements are restricted to prevent them from making mess, item destruction or falling down).

That's why some say caring for a dementia elderly is like a full-time job.

Preventing dementia

Dementia is a complex condition that can be caused by many factors, such as genetics, lifestyle, and environmental factors. While there's no guaranteed way to prevent dementia, there are several things we can do to reduce the risk:

1. Stay mentally active: Keep your brain stimulated by reading, playing games, learning new skills, and staying socially engaged.
2. Exercise regularly: Both physical and mental exercise has been shown to help lower the risk of dementia.
3. Eat a healthy diet: Eat a diet that's rich in fruits, vegetables, whole grains, and lean proteins, and low in saturated and trans fats.
4. Manage your health: Keep your blood pressure, cholesterol, and blood sugar levels in check, and manage any chronic conditions you may have.
5. Protect your head and take safety measures to prevent falls.
6. Get enough sleep: Aim for 7-8 hours of quality sleep each night.
7. Stay socially engaged: Maintaining social connections has been shown to help reduce the risk of dementia.

[Source: ChatGPT]

The irony here is - half of the points above are difficult for the caregivers themselves to attain. Eg. how to get enough sleep when your dementia elderly exhibits sun down syndrome?

This probably explains why I have been getting neck aches, headaches, a challenged temper and signs of premature aging. Sigh~

"Research into the causes of premature aging has shown that stress has a lot to do with it, because the body wears down much faster during periods of crisis. The American Institute of Stress investigated this degenerative process and concluded that most health problems are caused by stress." 

- Ikigai (The Japanese Secret to a Long and Happy Life)

AIC also provides resources for caregiver support. I would like to express my heartfelt thanks to Fei Yue Family Service Centre, as well as HCA for their home visits and timely supports over WhatsApp.

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Useful references: 

InvestmentMoat's Healthcare and Wellness finance planning

https://supportgowhere.life.gov.sg/

https://www.jaga-me.com/care-guides/dementia-care-guide/

AIC - Home Care Giving Grant 

If you have any thoughts or experience to share, please feel free to input at the comment box below.

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