Here’s How To Take Care Of Someone With Dementia
According to the World Health Organisation’s director-general Dr Tedros Adhanom Ghebreyesus, the number of people living with dementia will triple in the next thirty years. Known as an ‘old person’s disease’, Dementia currently affects 50 million people worldwide. In South Africa, it’s no different. In 2011 (the most recent year stats are available for) around 2.2 million people were affected by Dementia.
The growing number of cases prompted the WHO to set up guidelines to help the public reduce their risk of contracting the disorder. According to the WHO, “Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.” The disorder is considered to be one of the major causes of disability and dependency among seniors worldwide.
The Stages Of Dementia
But it’s not just the person living with Dementia that is affected by the disorder – there are friends and family are too. “Dementia is classified into three stages,” says CEO of LiveWell Villages, a specialised luxury care facility that looks after those with Dementia and other memory issues, Ivan Oosthuizen. “We either speak about mild, moderate or severe dementia.” Early-onset dementia occurs when an individual is diagnosed before the age of 65. During this time the dementia is still in the mild stage. “People can still be relatively independent during the mild stage of dementia,” Ivan says. “They have relatively few moments of poor function or moments of memory lapse and confusion.”
From the time of diagnosis, an individual will spend between two to three years in the mild stage of dementia. As the illness progresses, an individual’s behaviour and memory deteriorate. “This obviously depends on what form of dementia someone’s been diagnosed with. While Alzheimer’s make’s up the majority of the cases, there are other forms of dementia. You’ll find that some people are paranoid about their belongings being stolen, some are suspicious of others and then others tend to be lethargic or depressive.”
The mild to moderate stage of dementia usually lasts between three to six years. This is followed by severe to end-stage dementia. Once an individual has been classified with severe dementia they usually have one to three years left to live. “Inevitably towards the end stage your motor skills are severely affected, so is your ability to use language. Your movement and ability to process your spatial environment are challenged. We find that confusion really sets in this stage.”
Making A Plan
According to Ivan, the best time to decide how you’re going to take care of your loved one after they’re diagnosed is during the mild stage of Dementia. It’s important to take steps that will help them maintain a good quality of life.
During this time you should help them sort out any legal issue, sort out their finances, figure out what will happen to their moveable and immoveable assets. Ultimately you need to set up a curatorship so that someone else can take care of them when they’re no longer able to make those decisions for themselves.
While they’re still able to make decisions, consider finding a good facility that will take care of them during their final years. “One of the biggest challenges we find is that families struggle with the guilt of putting their loved ones in a home,” explains Ivan. “The more traditional families are often more prone to feelings of guilt. They all believe that they should be the ones to take care of their spouse or their parent. But it’s a hard task and there are facilities, like LiveWell Villages, that are better suited to take care of your family member.”
These care facilities often use a multidisciplinary approach to ensure that your relative is well taken care of. Along with ensuring your relative’s health stays optimal, they also offer activities like drumming, art and various forms of exercise to keep individuals stimulated.
While these facilities provide excellent services, the stark reality is that many people in South Africa won’t be able to afford to go this route. Alternatively, they might prefer to keep their loved ones at home. In this case, you can either ask a nursing agent to send nurses to your home or appoint your own caregiver. Ivan cautions that there are risks to appoint your own caregiver. “There are things like carer burnout. Your carer won’t be trained to look after someone with dementia. Someone with dementia will repeat themselves twenty times a day or they might become frustrated and slap you. When you’re taking care of that person the full emotional weight comes down on the carer.”
For those who choose to provide care at home, Ivan suggests appointing two carers. “If you go via the nursing agency what they will sometimes do is send you one person for a Monday and Tuesday and then a new person will come on Wednesday.” By rotating the people in charge of caring for your loved one, you ensure they don’t burnout and are continuously able to provide them with the best care.
If you do appoint someone without nursing experience there are several things they should look out for while taking care of your loved one:
- You should establish a good routine for your loved one, including when they eat their meals and what time they go to bed. “A good routine is very important for someone with Dementia because it provides them with structure.”
- Ensure that they complete well-thought out activities. “Carers should not just sit around on their cellphones and watch tv all day. Instead, they should let your relative build a puzzle or play a fidget board.”
- Make sure they get proper exercise and nutrition – this includes drinking enough water.
- Manage their medication properly. “Sometimes we find that when people come to our facility their medication has been so mismanaged. They become addicted to opioids because people their family think if they just keep them calm it’ll be fine. But that just makes things worse. So we end up having to wean them off the medication and integrating their correct medication.
- Set up proper access control to your home. “This is necessary to ensure your loved one doesn’t wander off. Sometimes you find that the carer will go to the bathroom and they’ll come back to find your loved one has wandered off.
“There a lot of things people need to be mindful of when taking care of their loved one,” Ivan says. “Often when individuals are mistreated, it’s not because their loved one doesn’t care, but because they don’t know how to take care of their loved one.”
If you do decide to go the home care route and find yourself needing a break, LiveWell Villages also offers a daycare service. “These services offer respite to someone looking after a family member with dementia. A husband might find he needs time by himself to get a haircut or do some admin. He can then drop his wife off at our facility and then pick her up later in the day.” You can make use of this service for half a day, a full day, two days or even a week at a time. “We found that it’s been very helpful for families who can’t afford the full month. When they need a break they can drop their loved one at one of our facilities and know they’ll be well looked after.”