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Ultimate Guide to Caregiving for Alzheimer’s Patients
Updated on: December 2022
Caring for someone with Alzheimer’s disease can be incredibly challenging and requires long-term care. Like with other forms of dementia and chronic memory loss, there may be days that are simply a recurrence of days and weeks before, but as the disease progresses, different issues become apparent and new behavioral patterns may begin to emerge. While this is frustrating for caregivers, try and remember it’s as frustrating for the patient, as well as scary.
As they become less able to do things they’ve always been able to, they will become more reliant on the people around them.
If you’re responsible for the well-being of a dementia patient, it’s important to know how best to care for them. Our guide for caregivers and dementia care includes some helpful tips for coping with the most common challenges you will face and help reduce the caregiver burden.
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Communication is one of the major challenges, both for the caregiver and the patient, with understanding and being understood becoming more difficult.
It’s best to choose simple words and use short sentences with a gentle tone of voice. Also, try and minimize noise and distractions like the TV or radio. This will help the person focus on what you’re saying.
Avoid talking to the person with AD like they are a baby or as if they’re not even there. Call them by their name and make sure you have their attention before you start talking. If they’re battling to communicate a thought or find the right word, try and provide it in a gentle way.
If you ask a question, wait patiently for a response and try not to interrupt them.
Coping with Hallucinations and Delusional Behavior
As Alzheimer’s progresses, there are a number of patients who experience hallucinations as well as delusional behavior. Hallucinations are basically when a person sees, tastes, smells, feels, or hears something that isn’t there and delusions are basically false beliefs that the patient can’t be talked out of.
Try reducing these episodes by turning the TV off when there are disturbing or violent programs on; sometimes the person with Alzheimer’s is unable to distinguish between reality and what’s happening on the TV. If you can, distract them with a new topic or a different activity. Changing location by entering a different room or even going into the garden can help.
As difficult as it might be, don’t argue with them as to what they hear or see. Instead, try and comfort them and respond to what they’re expressing or feeling. While you aren’t able to stop this, make sure they don’t have access to anything they can hurt someone with, and that they’re safe.
Changes in Mood
One of the hardest things to cope with when providing dementia care for Alzheimer’s patients is the sudden changes in mood, especially if the behavior is completely out of character. For example, when a person who has always been gentle in nature, with exemplary manners and etiquette suddenly starts using foul language and making rude comments, it can be upsetting and hurtful. The key is to find out what is causing the outbursts. While this won’t fix it, you will be in a better position to cope with it. Try to remain calm during these outbursts of aggression and remind yourself it’s not personal. Although this is difficult, it’ll help you deal with it.
Often, an outburst is caused by the patient’s frustration in not being able to communicate or understand. It might help to use one instruction or command at a time which will make the task easier to understand.
Caregiving for Alzheimer’s patients will involve keeping them as safe as possible. Some patients with AD tend to wander off, sometimes far away from their place of safety or from their carer. It’s important you know how to limit this wandering and protect them from becoming lost.
The first step is to ensure they wear an identification bracelet or similar such as a medical necklace. You could also enroll them in the Alzheimer’s Association Safe Return Program if it’s available where you are located. If a patient becomes lost and can’t communicate clearly, identification jewelry will alert medics and others to that person’s medical condition. You should notify authorities and neighbors so they are aware of the situation.
Make sure you have a recent photo or video recording of the patient to assist police, local newspapers, and neighbors should the person become lost and disorientated. Ensure doors remain locked and if necessary, consider using a deadbolt or a second lock. If the patient is familiar with the locks adding a latch will help significantly.
Elderly citizens and people suffering from Alzheimer’s disease may begin to experience incontinence as their condition worsens. This is as difficult for the patient as it for the caregiver offering long-term care—even family caregivers. Incontinence could also be due to a physical illness, so be sure to speak to the person’s doctor.
Some things that might help with this include:
- Having a routine taking the person to the bathroom and sticking to is as closely as possible. For example, take them to the bathroom every two to three hours, without them needing to ask.
- Keeping an eye out for signs they might need to go to the bathroom. These could be pulling at their clothes or showing signs of restlessness. Respond immediately.
- Be understanding when an accident does occur. Be calm and assure the patient that all is okay if they’re upset. Keep a record of when an accident happens and look for ways to prevent or avoid them.
- Limiting nighttime accidents by cutting down on certain fluids before bedtime and by certain times in the afternoon.
- Having a plan when you go out with the patient is essential. Know where the restrooms are, have a spare set of clothing with you and dress them in easy-to-remove clothes.
Bathing, Dressing and Eating
It’s important to remember even the most basic tasks are now a challenge for someone with Alzheimer’s and late-stage dementia, and something as simple as bathing, getting dressed, or even eating, could be a terrifying experience.
Establish a routine and plan the shower or bath when the patient is at their most calm. Speak to them throughout and explain clearly and with a step-by-step approach to what you’re doing to help the patient remain calm. If they can, let them do what they are able to first before stepping in to help.
Be prepared. Run the bath in advance and have everything needed to hand. If it is cold outside, make sure the room is warm, check the temperature of the water and have a robe and extra towels nearby.
Simplify things as much as possible, for example bathing every day isn’t necessary. Look at sponge baths for the days in between. Above all else, handle the situation with empathy and kindness.
Deciding what clothes to wear, struggling with zippers or buttons and getting clothes on or off are new challenges for somebody with Alzheimer’s. As their caregiver, you can make this task as stress-free as possible.
Have them dress at the same time each day so they get used to it as part of their routine, and encourage them to dress themselves as much as possible. Plan it so there’s enough time, without any pressure or stress.
Limit their choice and if they have a favorite outfit, buy several of the same.
Be sure to choose items of clothing that are easy to put on and take off and are comfortable. Avoid zippers and buttons and go for clothes with elastic waists or Velcro.
Eating, another activity that was second nature, can also become a challenge for a person with Alzheimer’s. Some people might need encouragement to follow a well-balanced diet while others might want to eat all the time.
Routine mealtimes are important, but remember to adapt to their changing needs and try to create a calm environment with limited distractions. Provide the patient with a number of choices but also limit them so that it doesn’t confuse them and ensure the foods are appealing with flavors they’re used to. Different colors and textures are also good.
If you face every challenge with a level of empathy, you’ll be able to make the necessary changes. For example, if you notice the patient is battling to eat with a knife and a fork, use a spoon. Replace a plate with a bowl and use lids with straws. Do this with as little fuss as possible.
Ideally, only serve smaller portions or a number of light meals each day. Have healthy shakes and snacks available and be aware of overeating in the early stages of the illness.
Even sleep can become problematic for a person with AD. While you might be ready to fall asleep on your feet some days, night time for people with Alzheimer’s can be difficult. Getting them to bed and keeping them there will need planning.
During the day, encourage exercise and limit naps but make sure they get enough rest in the day; otherwise, exhaustion can lead to late afternoon restlessness.
Keep the more demanding activities to earlier in the day, like bathing or family meals and at night, try and set a quiet tone with the lights dimmed and a minimum amount of noise.
Establish a routine where bedtime is approximately the same time every night and restrict caffeine intake late in the day.
If the darkness seems to disorientate or upset the patient, use night lights in their bedroom, in the hall, and in the bathroom.
Caregiving for Alzheimer’s patients is an enormous challenge and you might not always feel up to it, but if you can remember a few key points, it’ll help you and the patient with AD get through the worst days.
Be calm and don’t speak to the person as if they’re a child. As difficult as this is, it’s important to treat them with kindness and respect.
Make eye contact with them, call them by their name and remind them who you are if they don’t recognize you. If they’re confused, don’t get into an argument. Distract them if possible and respond to the feelings they’re communicating, rather than to what is being said.
And, most importantly, don’t take anything personally. If people with dementia are being rude, calling you names, or insulting you, remember that it’s not you—and it’s not them. They’re as terrified and as frustrated as you are and need your patience and empathy.