Do’s and Don’ts For Dementia Caregivers
Families often struggle with how to cope when a loved one has been diagnosed with Alzheimer's or another form of dementia. How will this condition evolve? What can we expect? How do we deal with the changes? The learning curve can be quite steep, and, as your loved one's condition progresses, new issues will arise that present different challenges for the family.
We are thrilled to have Nadine Jans, M. Sc, a dementia expert and consultant, guest write this article. Nadine is a clinical counsellor in British Columbia, Canada, and prior to that, a psychologist in the Netherlands. She is the founder of Uptimize, a company that helps people maximize their quality of life through counselling, consulting, and dementia training based on the latest neuroscientific insights and best practices. She has gained over a decade of experience working with older adults, people with cognitive impairment and dementia, their families, and professionals, in both communities and complex care facilities. Nadine has experienced personally how life is profoundly affected when a close family member develops dementia, and she aims to guide others with her personal and professional knowledge. With her background, Nadine is able to provide insight on some of the common issues associated with dementia and is able to give us valuable advice on caring for a loved one with dementia.
Short-Term Memory Loss
Short-term memory loss is one of the most common symptoms of Alzheimer's. This will typically manifest in the person asking repeated questions or in saying the same thing over a short timeframe. Your loved one may also start misplacing certain things because they not only forget where they left something but also start to place items in atypical spots.
The part of our brains that keeps track of what's going on, where we are, and what we are doing is the hippocampus. It also plays an important role in storing new information. The hippocampus shrinks with Alzheimer's disease, resulting in increasing difficulty retaining and storing information.
It is important for caregivers (both hired and family) of those with this disease to take into account the declining function of the short-term memory. If an item can't be found, remain calm and offer reassurance. Avoid clutter in the house. If mail goes missing, consider having it sent to a different address or to a PO Box. To counteract a person's repeated questions, reassure them, name their feeling, and then move onto a topic or activity they enjoy, such as a favourite snack or a compliment. Act as if you suddenly have a great idea: "Oh! I almost forgot! I have something really nice for you!" The surprise element helps distract the person so both of you can move onto the next activity.
A person with dementia can shift to a different time period and believe that the present time is a period in the past. They may start talking about their younger years and may bring up old events as if they were happening now. Referring to someone from their past as if they were still alive today, like their parents or an old friend, can be common as well.
As Alzheimer's progresses, the memory system becomes more affected. Memories that once were stored are now disappearing, beginning with the more recent memories. The older memories that are still left form the new context through which the person perceives the world. They may now believe they are much younger and that people who have passed away are still alive.
Avoid corrections or discussions about the hard facts. Instead, you can use this as an opportunity to learn more about what's going on in their world and to reminisce with a conversation about the past and good old memories. If a person is asking where his or her mother is, you can say something like: "I don't know where she is. Do you miss her? Tell me about her. Is she a great cook?" Follow your loved one to where he or she is mentally, instead of leading him or her to where you are.
The cognitive decline may present itself in various ways and may be different for each person. A person with Alzheimer's may exhibit challenges with exercising good judgment in making decisions, lack problem solving skills or forget how to do basic tasks. As the disease progresses, more daily activities become difficult or confusing. Nevertheless, the person still wants to do things and to feel useful.
Adjust, simplify tasks, and reduce options. Create a daily structure, but remain flexible. We all have days when we don't perform as well as usual, and this also applies to a person with dementia. Don't criticize, and don't push. Make everything ready for the person. Choose footwear or clothes that he or she can easily put on. Perhaps, mornings are better than evenings for certain activities, or vice versa. Your loved one's favourite music can help with certain tasks.
A person with Alzheimer's or another form of dementia will slowly start to communicate differently as they experience difficulty in finding the right words for what they want to convey.
Even though we rely heavily on verbal communication, our body language, tone, and pitch play an even bigger role. This becomes more evident when communicating with a person with dementia, especially when verbal communication is not an option anymore. We have to focus consciously on our own body language and on theirs, which can be a challenge. Slow, open, and friendly body language and facial expressions are essential to communication. If the person is trying to convey something he or she wants, be patient. Ask with simple words (e.g. "Drink?" or "Eat?"). The use of pictograms can also be helpful.
Show that you really care about what they try to say. If the person is attempting to share a story, express your interest by looking into his or her eyes and perhaps holding his or her hand. Even if verbal communication is not an option, we can still connect emotionally by holding hands, listening to music, or just sitting together quietly. Simply being present can enable us to connect in powerful and profound ways.
Resistance and aggressive behaviour are common characteristics associated with dementia. For example, your loved one may be resistant to certain forms of care or to taking pills at the correct times. Certain things may upset them although it may be unclear to those around them what triggered the upset.
This behaviour is not necessarily abnormal or unhealthy. Most people, not just those with dementia, can become irritated when being criticized or corrected, even though the other person is right. Explanations or discussions can lead to arguments where everybody ends up frustrated. You may have heard of the expression, "You can be right, or you can be happy," and applying this technique will help you maintain peaceful relations.
If safety becomes an issue, you may have to operate more behind the scenes. Try to find out how they perceive their environment and how they interpret the situation. You have to enter their world and find creative solutions that work.
We also have our higher, more complex brain regions that help inhibit negative emotions, provide reassurance, and allow us to see the big picture; but, in people with dementia, these higher complex brain regions are damaged. If you are stressed or work too fast when requesting that they take their pills, their brain may assess the situation as a threat, and then the brain is not able to see the big picture and to remain calm, so the person switches into "fight" (yells or pushes you away) or "flight" (says "no" or walks away) mode. That's why it's very important to act in a calm and predictable way when caring for a person with dementia. Compliments, positive feedback, and helping the other person feel useful are invaluable tools.
Sometimes, it's not worth the trouble if a task leads to increased resistance, so pick your battles. You can try at a different time when the person is in a better mood or is more receptive. Always remember to check whether or not the person is in pain as this could be the underlying factor in increased agitation
Finally, don't take resistance or aggression personally, even though it can be incredibly difficult. Talk with others who are in similar situations to provide relief from your own frustrations. It is as important to care lovingly for your own mental health as it is to care lovingly for a person with dementia.
You can learn more about Nadine and her passion for dementia care by visiting her website.