The World Health Organization’s (WHO) latest fact sheet on dementia, published in September 2021, defines the condition as a “syndrome in which there is deterioration in cognitive function beyond what might be expected from the usual consequences of biological ageing”. It affects “memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement”. Importantly, rather than a one-off incident, it has to be a chronic condition to fit the definition. 

Dementia is not strictly limited to the elderly, since it can also affect HIV-positive individuals or develop after a stroke or multiple traumatic brain injuries, among other causes. In fact, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published by the American Psychiatric Association, has eliminated the word dementia altogether, partially due to the stigma it carries as well as the reluctance to accept a dementia diagnosis among younger patients. Instead, the DSM-5 replaces “dementia” with “major or minor neurocognitive disorders”. However, the term is still in use among professionals around the world, as evident in the abovementioned WHO fact sheet.

Although there are different forms of dementia, from vascular dementia to Lewy body dementia, Alzheimer’s disease remains the most prevalent, contributing to between 60% and 70% of cases. Caregiving for loved ones specifically diagnosed with Alzheimer’s rather than other forms of dementia, is the focus of this article. 

Caring for loved ones with Alzheimer’s

“Dementia is very individual, you can have two people with Alzheimer’s and the memory loss experience might be different, some of the behaviours might also be different. So our guidelines focus on the most common types of dementia, and of course the most common being Alzheimer’s,” says Loraine Schirlinger, the former national trainer and regional director of the non-profit Alzheimer’s South Africa, and a retired nurse whose speciality is in psychiatry and gerontology. While working part-time at the University of Witwatersrand in 2004, she was asked to develop a caregiving course by the then national director of Alzheimer’s SA, as there was no such course at the time in South Africa, says Schirlinger. 

Diagnosed with Alzheimer’s – what’s next?

“Finding out your spouse has dementia is very difficult. You might have had an idea that something was up, and you might have prepared yourself a bit, but the confirmation can still be a shock. You need to stand back a bit and not rush into things. Don’t become a caregiver overnight. Carry on with your life. If you were planning on going on holiday next month, go on and do it, honour those arrangements,” says Schirlinger. 

Before making any major changes, she advises potential caregivers to inform themselves about the condition through resources such as the Alzheimer’s SA website, DementiaSA website, as well as information from doctors. Equally important, they must sit down and discuss the diagnosis and its implications with the loved one who has been diagnosed. 

“Sit down with them; make plans for the future. Make sure you’ve informed yourself as to how the disease is going to progress so that you can make plans. Those are not necessarily plans you will put into action immediately. 

“For example, if you know that they might eventually become incontinent, it’s not to say that you need to start preparing for their incontinence today, as that might still be years away. But if you’re equipped with knowledge of what to do when the need arises, you’ll know how to attend to it. It’ll be less of a shock. Understanding the progression of the disease also means their behaviour will be less confusing. You’ll be less likely to be irritated or angry with them should they do something you might not quite understand,” Schirlinger explains. 

Accept that you will need support 

“It’s important to hear from other people what their experiences are and how they’re managing it, and to know that you’re not alone,” says Schirlinger. Beyond being a source of information, Alzheimer’s SA also has a network of support groups across different provinces, specifically for family members and carers for people with dementia. DementiaSA also has virtual support groups conducted via Zoom, as well as a selection of webinars on their YouTube channel.

“You cannot do this alone. Give yourself a little time to adjust to your loved one’s diagnosis, but make sure to inform the rest of the family as soon as you can. Ideally you will need support from both your family and your friends. If you don’t have a family, try to develop a support system among your friends.” 

Dr India Butler, a Johannesburg-based geriatrician and the former vice-president of the Association of Geriatrics South Africa adds: “It actually can’t be done by one person. It has to be like a village. I’ve witnessed caregivers trying to go at it alone and in many cases they end up so stressed and sometimes neglecting their own health and getting sick. I find that it’s important to remind them that it’s okay to seek help; getting someone to relieve them or outsourcing parts of the care when they can; or making sure that they join a support group. Because it’s too much for one person to handle alone.” 

Go with the flow

“Alzheimer’s is a memory problem, and that can cause challenging symptoms because the brain likes answers, and if it doesn’t know the answer due to the memory loss caused by the disease, it will insert an answer, even if it’s a lie. We call that confabulation, and it often gets quite paranoid,” says Butler. For example, a husband might pop out to the shop for a few minutes, leaving his wife who has Alzheimer’s at home. She might forget that he went to the shop, and in search of answers, her brain might conjure up bad scenarios, and lead her to become absolutely convinced that he’s having an affair. In another example of confabulation, if a person with Alzheimer’s can’t find their bag at home, they might find themselves convinced that a caregiver or domestic worker has stolen it. 

“Instead of arguing and fighting, which is utterly pointless, it helps a lot to understand that it’s just how their brain works now. If your father suddenly thinks you’re his mother, there’s no point in correcting him and telling him that his mother’s dead, for example. Because then it’s like Groundhog Day for them. Every time you tell him his mother is dead, he has to go through the grieving process again. So I tell my patients that in similar situations, it’s okay to lie for the greater good. You’re allowed to say things like ‘your mother’s at the shop’. Of course, you have to know a bit about the person to give them an answer that fits, otherwise they’ll repeat a question until they get the right answer,” says Butler.

She emphasised that it’s pointless to have an argument that might upset them or to try to correct them over minor details like what day of the week it is if they get it wrong, because most of the time these are details that don’t really matter, they may not remember the argument but the feeling that you are cross with them remains. 

“It is always better to try to learn to accept and go with the flow. Join them in that moment, and if it means you have to join them in a moment from three decades ago, when their mother was still alive, just join them where they are, be with them in that moment. It doesn’t matter if they’re wrong or they don’t know what day it is. It matters to us because we feel sad for them, but in those moments they might not have the insight and it doesn’t matter to them. Walking the path with someone who is essentially dying, be it over six months or 10 years, is one of the hardest things that humans can do. But it’s also one of the most wonderful privileges, to be there for that person. All we want is for them to have the happiest and best quality of life that we can achieve. But it is important to give them that without seriously harming yourself, without endangering your physical and mental health,” explains Butler.

Self-care for the caregiver

Both Butler and Schirlinger stress the importance of working on strategies to maintain one’s quality of life as much as possible. If they have trusted help around the home, to be okay to step out for a couple of hours and do something regular, be it errands such as going to the bank or something more recreational. If possible, Butler recommends pulling in family members for scheduled activities. For example, she says, one of your children could take your spouse to the salon on Saturdays.

“Some places offer what we call respite care, where you could arrange that the person goes there for two weeks, and you go on holiday. And that’s fine; in a way, being rested and mentally well means that you will be a better companion and caregiver, rather than being burnt out and stressed,” says Butler. She adds that looking after one’s own health also involves paying attention to one’s nutrition and physical exercise. 

She also advises patients to accept that the time might come, when it might be almost impossible to look after one’s parents at home. Says Butler: “Sometimes the disease is so destructive that it takes an army of people with shift work. That’s the beauty of old age homes, the nurses get a break. They work for 12 hours, then they have 12 hours off, or they do seven days or nights, and then they have seven days off. So it’s factored into medical work that you absolutely have to have a break, but unfortunately it’s often not factored into caregiving.” 

Finances and other practical issues

There is going to come a time when the person will not be able to use their signature, or their handwriting might change completely, says Schirlinger. This, as well as the potential decline in their ability to reason, means that a plan has to be made for those eventualities. There has to be a clear understanding of what assets are in their name, followed by a discussion about transferring power of attorney. 

However, in South African law, power of attorney is not permanent. It only remains as long as the person granting it can be proven to still be “mentally and legally competent to manage their own affairs”. For example, an elderly person of sound mental state might transfer power of attorney to a family member to assist them with certain tasks, and that is allowed. However, if it can be proven that their mental health has deteriorated, in order to protect them from being taken advantage of, the court may legally appoint an administrator to look after their affairs. The family can also initiate the process of the appointment of an administrator by applying to the court.

In these cases, it is important for families to discuss and make decisions together while the person is still able to reason. This could include decisions about whose names certain assets are in, or perhaps the transfer of funds. Schirlinger advises that families make the decisions around transferring ownership of certain assets very early on, while the person who has been diagnosed can still be judged to have the mental capacity to do so. 

“Although a living will is not a legal document in South Africa. I would recommend that the person who has been diagnosed writes one early on, and if they have children, bring them together and get them to sign it as well, because sometimes at the end of life there might be arguments among the children. Such a will would at least make it clear what the person wants done. For example, what kind of care they would want, like how they would want to be fed if they were no longer able to ingest food through the mouth, or what should be done if they fell into renal failure, or their organs shut down,” says Schirlinger. 

Takeaway. The dos and don’ts when caring for a person with Alzheimer’s

As outlined by Alzheimer’s South Africa:

Do:

• Acknowledge them;
• Have patience;
• Adapt your routines to best suit both of you;
• Remember that you can control your actions and responses, they cannot;
• Appear friendly. SMILE;
• Watch non-verbal communication;
• Give reasons for a task;
• Respond to emotions;
• Encourage control, independence, decision-making;
• Speak calmly at eye level (make eye contact);
• Use humour when appropriate. See the funny side;
• Respond honestly to verbal concerns/comments unless it may cause undue stress;
• Use familiar words. As the disease progresses, ask close-ended questions;
• Touch to distract/indicate;
• Hug if appropriate;
• Break down tasks into manageable tasks at the person’s level;
• Treat as an individual ADULT with rights. Present choices but not more than two choices at a time;
• Maintain routine as much as possible;
• Make a photograph album, a memory box;
• Give one instruction at a time;
• Use hand gestures when talking to the person;
• Believe/agree with what the person tells you;
• Distract problem actions;
• Be with the person in their moment and their world;
• Accept their fears and anxiety;
• Ask yourself, “Does it matter?” when dealing with difficult behaviour;
• Give them treats that they enjoy, such as ice cream;
• “Let go” and accept (“go with the flow”);
• Give moments of joy;
• Let the person take risks – life is full of risks;
• Move into his/her world.

Do not:

• Be “bossy”;
• Raise your voice or shout;
• Argue;
• Ask open-ended questions as the disease becomes more severe;
• Rehabilitate;
• Discuss them in front of them as you never know just how much they understand;
• Talk down to them as though they are a child;
• Reprimand or criticise;
• Restrain, isolate;
• Assume;
• Overwhelm with instructions;
• Make false promises;
• Use force;
• Correct them;
• Remind them that they have forgotten;
• Ask them if they remember.

DM/ML

In case you missed it, also read The link between hearing loss and dementia

The link between hearing loss and dementia