It is often difficult to care for a parent, spouse, or family member with dementia. Many people underestimate the difficulty of caregiving and don’t take care of themselves, making caring for their loved one even more difficult.
If someone you love has dementia, here is an easy-to-read caregiver’s guide for what caring for a loved one with dementia entails, what you can expect, and how you can care for your loved one without sacrificing your well-being.
The challenges and rewards of dementia caregiving
When you care for a loved one, it is essential to remember that many challenges are associated with dementia care.
It can be difficult to follow an unfamiliar schedule and figure out what your loved one needs at different times of the day. It may also be challenging to communicate because your loved one may not understand anything you say; therefore, it is essential to learn as much as you can about dementia and what it entails.
However, the rewards of caring for a loved one with dementia can also be great. You will get to spend more time with your loved ones. The relationship between caregiver and cared for can deepen in ways you didn’t expect it could, especially if your loved one seems like they are gone but still has moments of clarity where they seem like their old self.
Your loved one may also feel more comfortable being cared for by someone they know, and being able to stay in the comfort of their own home can improve the overall quality of life.
Knowing that you made a difference in your loved one’s life can be rewarding and make all the long hours you spend caring more than worth it.
The 7 Stages of dementia
Dementia progresses through three general stages: early, middle, and late. Medical professionals use a seven-stage scale that is more comprehensive. They use symptoms and evaluate the person’s cognitive abilities to figure out exactly how bad their dementia is.
Stage 1: Pre-dementia stage
Many people who have Alzheimer’s disease or dementia living in the pre-dementia stage may no longer be able to keep their thoughts organized. They may forget things more often.
Stage 2: Early mild cognitive impairment
Some people with early mild cognitive impairment will maintain conversations and carry out tasks, but it’s more difficult for them than it is for others. You might notice they have trouble organizing themselves or taking notes. They might need help following a short series of instructions. They can still take care of themselves in most ways, but it takes more time and effort.
Stage 3: Mild stage
In the mild dementia stage, people will be noticeably slower in their responses, and their memory will become impaired. They might have trouble understanding conversations or following them. Their sense of time is often affected, and they may feel that a short amount of time has passed even though it has been hours since they last ate.
Stage 4: Moderate stage
People in the moderate dementia stage may show changes in their ability to think and have lost independence. They may need help with decision-making. They may also struggle with orientation, memory, and communication problems, feeling anxious or scared. The person might experience agitation, which can make behavior more challenging.
Stage 5: Severe stage
People in the severe dementia stage are often confused and have little ability to communicate with others. They will need help with almost everything, even feeding themselves. Even when they are eating, they may not remember or understand why or what they’re doing. They may also experience hallucinations or delusions, which can make behavior more challenging.
Stage 6: Very severe stage
People in the very severe dementia stage sleep a lot, and they are mostly unresponsive to others. They need help with eating, drinking, and toileting. At this point, many begin to look into hospice care.
Stage 7: End-of-life stage
People at the end-of-life stage are at the final stages, and they usually die within a few weeks or months of entering this stage. Caregiving for them is mostly about providing comfort and support as much as possible until they die.
Coping with changes in communication
As dementia progresses, your loved one’s communication skills may become more fluid. Their speech patterns will change, and they may forget words, repeat the same things, speak slowly, or talk about something completely different.
Interactions with your loved one gradually become more complex, but it’s still good to spend time getting closer together by sharing stories, reminiscing about the past, and building new memories.
Make eye contact, remain calm, and be patient when you’re speaking. Don’t argue with them or correct their mistakes. Try to understand what they are saying rather than focusing on the exact words that come out of their mouth. Give your loved one time to respond, so he doesn’t feel rushed or under pressure.
Handling difficult behaviors.
As the disease progresses, the most significant challenges facing family caregivers with dementia are behavior changes.
To manage challenging behavioral patterns, the key is to be creative and flexible with the strategy to address a particular problem.
Keep it simple in the beginning. Pick a few strategies, change one variable at a time, and give yourself time to see how things work out before trying something else.
Your loved one might be acting out due to boredom or frustration. Try doing new activities together, like playing cards or going for walks outside.
In some situations, it might be easier to remove the source of the problem rather than trying to deal with the behavior itself. For example, if your loved one keeps arguing or doesn’t seem to understand why they should do what you want, consider whether or not having that conversation is worth the stress it might cause. You may find it more effective to invest your energy elsewhere.
Understanding what’s really going on is your first step toward finding a solution. Whether it’s because of fear, loneliness, or boredom, always consider what you can do instead of ignoring or confronting the undesirable behavior. Give yourself some time to understand what’s going on before taking action, and identify a few strategies in case only one works.
When you identify a challenging or disturbing behavior pattern that you don’t know how to handle, don’t be afraid to consult a professional. A counselor or dementia specialist will be able to help you develop strategies and give you guidance that can help your loved one manage troubling behavior more easily.
Don’t be surprised if you have to answer what day it is or where you are every time you show up at your loved one’s home. This type of behavior is very common and often starts at stage 3 when memory loss becomes more apparent.
The best way to handle repetitive questions is to answer them calmly and patiently each time, even if your loved one asks the same thing five minutes after you just answered it.
To keep calm and not let it get to you. Try using different words or gestures to communicate the same information. For example, if your mom keeps asking what time it is and you tell her for the third time in a row, you might try showing her your watch to avoid repeating the same information over and over again.
People with Alzheimer’s disease or related dementia can become confused about time periods and places they may have visited. Care starts with empathy and compassion but is particularly pertinent for dementia caregivers.
When your loved one is confused, pay attention and try to understand why. Your loved one might be having trouble processing new information or trying to fill in gaps of memory loss. Be empathetic when they seem uncertain about any given situation, always speak in a reassuring tone and when you can’t figure out where they are coming from, ask.
In the early stages, your loved one may have difficulty performing everyday tasks that were once easy. Empathizing and sharing in their frustration of losing independence can help your loved one feel understood.
Eating and drinking
It is common for people with Alzheimer’s disease or dementia not to drink or eat as they do not realize they are thirsty or hungry. As the caregiver, you will need to identify your loved one’s hunger and thirst cues rather than expecting them to recognize them themselves.
Besides not being in tune with their hunger or thirst, people with dementia often lack interest in actually eating. It could be for various reasons such as depression, lack of appetite, or plain discomfort.
If they are not interested, but you need them to eat, try engaging in a pleasant activity before or during each mealtime as an alternative way of encouraging them to eat.
– Understanding why your loved one is refusing food and identifying the motivation for this refusal will help you address it.
– Eating on a schedule can be very effective.
– Prepare finger foods that are easy to eat.
– Offer highly nutritious foods, so you get the most bang for your buck.
Incontinence and toilet use
People with dementia in the later stages often have trouble with day-to-day tasks like using the bathroom. When they lose their ability to use the toilet, caregivers will need to learn how to effectively address incontinence or lack of toilet use.
Like always, it is best to try and understand why it’s happening first before taking action. Incontinence can be due to several different reasons, including medical reasons or the person’s own choice.
– Don’t be afraid to ask for help from professionals or other family members.
– Place incontinence pads underneath the person’s bedsheets and mattress cover to prevent leaks from reaching other surfaces.
– Clean up messes as soon as possible, but try not to get angry if it happens.
Washing and bathing
Like many other daily tasks, a person with dementia may forget the proper steps in bathing and lose the idea of self-care. As caregivers, this is another task that you will need to take on yourself.
Even if your loved one seems not interested in their personal hygiene, it is important to keep up with it for both your sakes.
– Use their favorite scented soap or body wash to make them feel happy and at ease.
– Try to keep the bathing session as short as you can for both your sakes.
– Show them what you are doing step by step, slowly and with patience
Dementia can mess up sleep habits and lead to problems with their body clock. People with dementia may have trouble falling and staying asleep through the night.
As caregivers, you will need to help your loved ones maintain their best possible sleeping habits for as long as they can.
Keeping them on a regular schedule is essential no matter what. Make sure that there is enough time to sleep and that they do not stay up too late.
– Keep them on a regular schedule as much as possible, especially when it comes to bedtime and wake time.
– Try to keep the sleeping environment as dark and quiet as you can.
– Start to wind-down for bed 4 hours before bedtime. Avoid electronics caffeine and any stimulants for that matter.
People with dementia can wander because of several different reasons. Some people may try and navigate their way around the home or yard, while others may be unsure where they are and could get lost even in a familiar place.
As caregivers, it is important to monitor your loved one’s walking and ensure safety. While you cannot always stop them from wandering, you can prevent falls by ensuring that they are in a secure area that is clutter-free.
Many recommend getting your loved one an identification bracelet in case they wander out of the house in the moderate and severe stages.
– Clear the routes that they use to get around the home of obstacles and clutter.
– Keep them on a regular schedule as much as you can. It will give them some comfort and help reduce wandering.
– Set up barriers to prevent them from going outside the house without a family member present.
Many people with dementia will become paranoid and suspicious of caregivers and family members. They may believe that caregivers or family members are out to get them or up to no good.
They might fear someone is trying to break in to steal the TV remote or sneak off with their personal belongings. They may even accuse you of stealing their money or other items.
As caregivers, it is important to keep in mind that this sort of behavior may happen and take it with a grain of salt. If you get angry or upset because of the accusations, they will only get worse. Keep your cool and concentrate on keeping them safe rather than arguing about who is taking what.
– Do not get angry or upset, as this will make your loved ones believe they are right.
– Let them know that you love and care for them no matter what, even if they don’t do the same.
– Keep them in their comfort zone as much as you can.
Don’t neglect your own needs.
Self-care is the most critical part of caring for a person with dementia. While it is important to care for your loved ones, you need to make sure that they are not taking over your life.
It can be easy to neglect yourself when you spend so much time caring for another person, but it’s still necessary to take care of your needs and theirs.
Caregivers need to stay active, take regular breaks, and stay on top of their own personal care. It won’t be easy, but you need to make sure that you are taking care of yourself to provide the best care possible.
Even if it is something simple like reading a magazine or listening to soothing music, you aren’t neglecting your loved one by taking some “me time.”
– Take time for yourself, even if it’s just a little bit every day.
– Take care of yourself when it comes to eating and sleeping. Create a daily routine that includes healthy eating and plenty of sleep.
– Get some help from friends or respite care to make sure that your needs are being met as well.
Resources for Dementia Caregivers
Many resources are available for dementia caregivers. Such as local resources from non-for-profit organizations that assist in helping families caring for loved ones and setting up local support groups to Medicaid programs such as CDPAP that allow you to get paid by the city for caring for your loved ones.
Caregivers may also want to consider joining forums or Facebook groups where you can connect with other caregivers in a safe space where you can vent and share advice from other caregivers.
Online support groups are a great way to connect with other people going through a similar experience.
What is the best way to care for someone with dementia?
There is no clear answer to this question, as there is no one definitive answer. There are many caring for dementia that says patience, empathy, and flexibility are the keys to peace. However, you need to follow no one set of guidelines to be a good caregiver for someone with dementia.
Some people do better with a firm approach, while others respond to a gentler touch. You will have to make the judgment call as to what works best for your loved one and try not to worry about following any specific guidelines.
Providing dementia care to a loved one can be a daunting task, but it doesn’t have to take over your life.
Remember that you are not neglecting them by taking time out of the day for yourself. Make sure you’re getting enough sleep and eating healthy to keep up your energy levels while caring for another person who may need more attention than they give back.
And finally, take some time to look for resources, online support groups, or join in-person groups in your area that may be able to give you advice or support when it comes to caring for someone with moderate or severe dementia.
For more local resources and pro tips make sure to join the Dementia Caregivers of New York and start connecting with other caregivers in your area.