Caring for a Loved One with Dementia

“Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way through it” – Michael J. Fox

Have you ever walked into a room and just stood there, wondering why you went into that room?

We all forget things sometimes and it is normal to experience temporary forgetfulness, mood changes, and mix-ups occasionally. However, if these become more frequent and interfere with activities of daily living, it may be a sign of a condition called Dementia.

What is Dementia?

Dementia is a very complex condition, so the first step in caring for your loved one with dementia is to understand what it is. Dementia is an umbrella term that describes a set of symptoms, the most common being memory loss, changes in mood, wandering, repeating questions, and difficulty expressing thoughts. These symptoms may seem small at first but can significantly affect someone’s daily life, behaviours and even their personality as the condition progresses.

Dementia is caused when the brain is damaged by other diseases or strokes. Alzheimer’s disease is the most common type of dementia. Other types of dementia include Vascular Dementia, Dementia with Lewy Bodies and Parkinson’s Dementia. There are currently no treatments that can reverse cognitive decline in dementia patients, but there are a number of approaches to reduce symptoms and maintain a good quality of life for as long as possible. Consulting a medical professional is the first step to diagnose and control the symptoms of dementia.

Most people are able to take care of themselves during the early stages of dementia. However, as the condition progresses, your loved one may behave in ways that you have never seen them behave before. As a caregiver, you want to be prepared, confident and have a sense of satisfaction that you are doing your best in supporting your loved one through this challenging disease. Caring for a loved one with dementia can be challenging and overwhelming, but there are ways you can manage it calmly and patiently to keep your loved one comfortable and happy.

In this article, I will share what I have learnt while caring for my Dad. He has Parkinson’s disease, which causes dementia at times. He is pretty stable most of the time, but the dementia episodes occur randomly and sometimes very suddenly. An added challenge is that he is visually impaired. The examples I share are real, and I have learnt how to manage them by reading about other people’s experiences. A lot of it is trial and error, but you learn a lot about the behaviours and how to manage them as time goes by.

Memory Loss

The most common symptom of dementia is memory loss and memory lapse. People with dementia may consistently forget where they put something, where they are, or how much time has passed. Memory lapse is when the person does not remember much about the present and the recent past, but clearly remembers their childhood and youth, probably 40 to 50 years in the past. They are convinced that they are in that time period, and talk about things and people from that period.

My Dad sometimes forgets that he has mobility limitations and is in a long term care home in Canada. When he gets into the past, he talks about his friends from that time, and tries to get up because he wants to go and visit his friend. The first instinct is to simply tell him “you are in Canada and your friends are not here”. This just aggravates him and he becomes more stubborn about getting up. Over time, I have learnt that when he starts talking about the past, it is best to respond in a compassionate manner by saying things like “sounds like you had a lot of fun with your friends when you were young”. The key is to focus on the joy he is feeling by remembering those times, and encouraging him to talk about a funny incident. Then, I gradually bring him to the present by telling him something funny that happened in the recent past, intentionally mentioning places in Canada, such as Tim Horton’s or Toronto. He may seem confused at first, but I give him time to process what I say. He asks questions to confirm that we are in Canada, and sometimes it gets repetitive, but the key is to always talk calmly and not dismiss what he says. It takes time, and sometimes I feel like I am going around in circles, but I remind myself that I am doing my best and my efforts will not go to waste.

Delusions and Hallucinations

People with dementia may experience delusions and hallucinations where they do not believe things as they are. Delusions are false or paranoid beliefs which will not change, regardless of how much evidence you give them. Hallucinations are imaginary perceptions that seem very real to the person experiencing them but cannot be seen or heard by other people. These false perceptions can lead to impulsive reactions and negative behaviours which can be very upsetting for caregivers. Remember to intervene only if the delusion or hallucination is upsetting or injurious to you, your loved one or others around them.

Sometimes, my Dad experiences hallucinations about someone breaking into his room from the window and stealing his things. When this happens, telling him “there is no one breaking in”, will only aggravate him. Instead, it is important to understand that the hallucination is real to him, I have realized that I need to stay calm and not get angry or argue with him. I have learned to comfort him by saying “I understand this must be very scary for you, and I am right here beside you”. I also ensure there is no noise that may sound like someone is breaking in, and play some soft music or relaxing sounds that will distract him from the hallucination.

Wandering

Dementia can cause disorientation, causing a person to wander and lose their way. Wandering is often caused by memory lapses where the person wants to go to a place from their past, meet someone from their past or search for familiar objects. It may also be triggered by stress, anxiety and a feeling of being in a strange place because they do not recognize people or objects around them.

My Dad tries to get up from his bed or wheelchair, and says he wants to go and collect rent from a tenant (he used to do this when he was young, in his home town). When this happens, simply telling him “don’t get up, you don’t have any tenants here”, makes him more defiant. Instead, it is important to distract him from the task by engaging him in a conversation about the time he used to collect rent, and then gradually bring him to the present time and place. In the meantime, I would also feed him his favourite food, play his favourite music, or take him outside for a stroll. These activities help distract his mind from the wandering thoughts, while the fresh air and sunshine refresh him and give him the satisfaction that he went outside.

Repetitive Actions

People living with dementia often display repetitive behaviours such as asking the same question or doing the same actions repeatedly. These are not intentional or a way of seeking attention. The truth is that they do not realize their repetitive behaviours and do not have control over these behaviours. As caregivers, it is important to understand that these behaviours could be caused by feelings of sadness, loneliness, insecurity or an inability to express what they need.

My Dad asks about his brother, even though he passed away many years ago. The saddest part about questions like these is that every time we tell him that his brother has passed away, it is as if he is hearing about it for the first time, and he goes through the grieving process each time. This happens when he asks about other family members who have passed away as well. Imagine grieving for the same person over and over, because you think that the person just passed away. At times like these, it is important to be compassionate and focus on the emotion rather than the question. I remind him to think of the fond memories and funny stories, to replace the sadness with feelings of comfort and happiness.

Aggression & Agitation

One of the worst symptoms of dementia is how it can change a person’s behaviours. Even the calmest and kindest person can display physical and emotional behaviours such as shouting in anger, telling someone off or even hitting. These may come as a shock for caregivers especially if you have known your loved one never to have exhibited these behaviours all their life. Remember that dementia happens because of damage to the brain, affecting not just memory, but also judgement, mood and behaviours. It is crucial to know that there is a true meaning behind these behaviours, and we must reflect on the reasons why they are behaving in this manner.

My Dad has a very calm, laidback, positive personality. However, there are times when he gets agitated, angry, and does not allow anyone to touch him or help him. Sometimes he gets stubborn and refuses to eat or take his medication. This behavior can be very alarming to those who have known him for years, and it is heartbreaking to see his behaviour changing because of dementia. I remind myself that he is still the same person I have known all my life, and his behavior could be triggered by tiredness, frustration, pain, discomfort, change in environment, or feeling lost because he does not understand what is happening to his brain. First, it is important to identify the trigger, and respond in a supportive, reassuring and gentle voice. Then, I give him time to calm down, after which he usually explains what he was feeling, or what he needed. I try to address his feelings and needs as best as possible, or redirect his attention to distract him from the trigger.

These are only a few of the most common symptoms of dementia. As I mentioned before, dementia is a very complex condition and each person’s experience is different. The single most important fact I have learnt is to focus on my Dad’s feelings and emotions, and address them with kindness and compassion. Every behaviour is usually triggered by something that he is feeling, so it is crucial to identify that feeling instead of getting upset at his behaviours. He has been battling Parkinson’s disease for over 10 years and still continues to amaze and inspire me with his positive attitude and passion for life.

Be Kind to Yourself

Last but not the least, be kind to yourself and give yourself time to observe and learn about your loved one’s behaviours. It takes a lot of patience and courage to get through dementia episodes. If a situation gets too overwhelming, move away from the area, let yourself and your loved one calm down and re-approach the situation with a fresh mind. Remember, the dementia patient is not giving you a hard time; they are having a hard time.

Do you care for a loved one with dementia? Please share your experiences so we can help each other become better caregivers.

Reference: Alzheimer Society of Canada https://alzheimer.ca/en