Guide to Taking Care of a Loved One with Dementia
Guide to Taking Care of a Loved One with Dementia
If you are caring for someone with Alzheimer's or other forms of dementia, you understand how challenging it can be. Facing the reality of your parent or loved one dealing with memory loss, mood swings, agitation, communication issues, and challenging behaviour is no walk in the park. As a care partner, you may be unsure about where to turn for help, worried about what to expect as the condition advances, and concerned about your ability to provide the necessary support.
While there are no known cures for dementia yet, there are ways to help manage symptoms and provide support to family members and friends. This comprehensive guide offers information about how to deal with common behavioural and communication issues associated with dementia.
First, we'll have a brief discussion about what dementia is, but if you want a more thorough discussion, you can read the following articles:
Dementia vs. Alzheimer’s: Understanding their Similarities, Differences and Support Needs
Early Signs of Dementia: 10 Signs to Watch Out For
We have also divided this guide into three categories: (1) helping someone with daily tasks, (2) managing troubling behaviours, and (3) taking care of yourself as a carer. Under these categories, we will discuss specific tips and advice on how to handle specific scenarios.
What is Dementia?
Dementia is a progressive brain disorder that affects memory, thinking skills, behaviour, and physical abilities. As the disease progresses, it becomes increasingly difficult to perform everyday tasks like cooking, cleaning, shopping, paying bills, taking medications, and managing money. These challenges are often compounded by behavioural problems, depression, anxiety, and agitation.
In addition to the symptoms listed above, people living with Alzheimer’s experience changes in mood, personality, sleep patterns, appetite, weight, and social interactions. This makes caring for someone with Alzheimer’s even harder because the caregiver must deal with the emotional side effects of the disease along with the practical ones. As the disease progresses, care partners must adapt to changing needs and adjust their expectations about how much support they can give.
The Australian Institute of Health and Welfare estimates in 2021 that up to 472,000 Australians are living with dementia. Alzheimer's New Zealand, on the other hand, reports that up to 70,000 of its citizens are living with dementia today.
1. How to help someone with daily activities
A. Eating and drinking
With memory loss as one of the primary symptoms of all the stages of dementia, oftentimes people with the disorder may forget to eat on time and drink enough water throughout the day. In severe cases, people with dementia may not even recognise food. If this pattern continues, it may lead to weight loss, malnutrition, and dehydration. As a carer, it would be helpful to create a fixed time or schedule for eating every day. If you notice that they are forgetting to drink, you can remind them to take a sip of water every hour. Make sure to include nutritious food in every meal - you can read our article 11 Tips for Eating Healthy on a Budget to learn how you can prioritize health without breaking the bank.
B. Washing and bathing
According to the Victoria State Government's Department of Health, it is common for people living with dementia to lose interest in personal hygiene. They may forget about bathing or changing clothes and they may experience anxiety about bathwater depth, noise from showers, and fear of falling while taking a bath. These fears are common among those with mild cognitive impairment, and they can lead to agitation and increased stress levels.
If you want to ease the worries of someone with dementia about washing and bathing, you can do the following:
Use warm water.
Make sure the tub is not too deep.
Close the bathroom door at all times.
Minimise the noise.
C. Sleep problems
People with dementia are often confused about what day it is and don't know whether it's morning or evening. This can lead to confusion over how much sleep they've had and why they feel tired. Some people with dementia experience disturbed sleep patterns, such as waking several times during the night and being unable to fall asleep again. Others wake too early in the morning and struggle to go back to sleep.
To help people with dementia get better sleep, especially during bed time, try the following:
Create a calming environment within the house.
Keep bedrooms dark.
Avoid caffeine after midday.
Encourage physical activity throughout the day
Limits naps in the morning and the afternoon
Turn off the phone before bedtime.
Treat and manage pain if it is the cause of loss of sleep.
Set up a sleep schedule and specific bedtime.
D. Urinary and bowel incontinence
Urinary incontinence occurs when someone loses control over his/her urine. Bowel incontinence happens when someone cannot hold onto their bowels. Both types of incontinence can be expected in people with dementia.
To avoid any 'accidents', you can:
create a regular bathroom schedule
put a pad under the bed sheets at night
improve bathroom accessibility
give verbal assistance when going to the toilet
look into medication such as laxatives (to soften stools) and antimuscarinics (to reduce the urge to go to the toilet).
take your loved one to the doctor if you suspect there is an infection causing the 'accidents'
2. How to manage troubling behaviour
A. Changes in communication
As dementia progresses, these changes in behaviour are to be anticipated. You may notice them exhibiting an increase in hand gestures, loss of their trains of thought, or repeating what they say over and over again. Some other signs of Alzheimer’s can also occur such as difficulty finding words, substitutions of one word for another, or getting lost in conversation. These behaviours are common because people with Alzheimer's suffer from memory problems.
If you are feeling frustrated, try not to take things personally. Say something like, "I can see how you might be upset" or "It must be frustrating for you". Do not blame others for the problem. You want to help them stay safe while communicating. Keep your emotions level, maintain eye contact, refrain from yelling, and remain calm. This will make it much easier for them to open themselves up. If they appear reluctant to talk, gently ask them what they think. Ask them if they felt any particular way about whatever happened.
B. Changes in behaviour and personality
People living with dementia will oftentimes show body language and personality changes. It can be distressing to witness as a care partner but always remember that this is not a personal attack on you. There may be underlying causes such as discomfort, pain, poor communication, or other environmental factors.
To manage these changes, try to identify any immediate cause that triggered the specific behaviour. Make sure to rule out pain as the cause of the behaviour before moving to the next course of action. Be reassuring, maintain a positive facial expression, and speak in a soft tone while talking to your parent or loved one with dementia. To help soothe the individual, you can try using massage or playing music. If a specific activity causes an abrupt shift in behaviour, switch focus to another activity or take a break and take them to a place that makes them feel safe.
If the behaviour is worrisome, it might be helpful to equip your loved one with Tunstall's Personal Alarms. These wearable, intelligent alarms have GPS location and optional fall detection features that allow users to reach 24/7 assistance from medical professionals.
C. Frequent Aimless Wandering
A person with dementia will typically wander away from home because they often find themselves not knowing where they are or what they are doing. They become disoriented and start walking in circles, but sometimes they just want to explore the world around them because they simply feel restless and bored.
People with dementia can sometimes experience apathy where they are indifferent to everything around them. If you find your parent or loved one wandering or staring at the yard for an extended time, try your best to figure out what's causing this. It may be thirst or hunger, or maybe they are looking for something in particular.
D. Aggressive Behaviour and Agitation
Agitation can be caused by many different things, such as environmental factors, fear, or fatigue. Someone with dementia may feel agitated when they feel as if their sense of control is being removed from them. The causes of agitation vary from person to person. Many times, agitation is triggered by some sort of change within the person's environment, whether it be hospitalisation or a minor inconvenience. Other triggers include changes in medications, stressors like surgery or illness, and even simple boredom.
This is why it is important to maintain structures and routines. Maintaining a consistent daily routine helps reduce the risk of them feeling losing control. Try to keep the same schedule each day and keep the environment clean and organised. Reducing noise, clutter, and even the number of persons in a room can also help calm them down.
E. Paranoia
Paranoia is common for people with dementia and it can manifest in many ways. They may suddenly feel accusatory, jealous, or suspicious. This can make them feel anxious and fearful. You should never blame yourself for their actions or thoughts. Instead, try to reassure your parent or loved one that you care for them and that nothing bad will happen.
If you are concerned that they are experiencing paranoia, here are things you can consider:
Try not to argue or disagree with them.
Don't try to convince them that everything is fine.
Be patient. Give them time to calm down and think clearly again.
Let them know they're safe.
3. Taking care of yourself
A. Make time for reflection
At each new stage of dementia, it gets harder to accept your loved one's limitations. You may find yourself feeling frustrated because they can no longer recall certain events that were once so important to them. You may even feel anger because of the difficulties you are facing. But take the time every day to reflect on how far they have come. Remember that they still have a lot more life ahead of them. With your help, they can live better lives. Though being a care partner may sometimes feel like a thankless job, know that you are strengthening your relationship with your parent or loved one each day.
B. Take breaks
It's easy to get caught up in taking care of someone who has Alzheimer's disease or another form of dementia. But remember that you need to take care of yourself too. When you do, you'll be able to give better care to your loved one. If your goal is to give the best care possible to your loved one with dementia, giving the best to yourself is part of that too. If you are anxious about leaving them, you can always ask for help from your friends and family. They can have a short visit while you are away so you can have peace of mind that your parent or loved one with dementia is under the best care.
C. Have a support system
Having a reliable support system throughout all this is a must. Knowing that there are people around you who understand what you are going through can help ease the burden of caring for someone with Alzheimer's. Family members and close friends can provide companionship and practical assistance, while health care professionals can provide additional hands-on care. If you need some extra hands to work on other household chores and errands, you can always ask someone for help. Enlist friends and family who reside nearby to run errands, cook meals, or watch over your parent or loved one so you can take some much-needed time away.
How Tunstall can help you care for a loved one with Dementia
Tunstall's goal is to provide an advanced system that can help both people living with dementia and their care partners. Our range of Connected Care products is designed to help reduce anxiety for carers and family members, reduce the risk of hospital visits, and support independent living. Learn more about what we can offer - contact Tunstall Healthcare today.
Keep reading: 5 Stimulating and Helpful Home Activities for People With Dementia
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