Caring for older adults suffering from dementia is no easy task. You want to love and support them as best you can, but it can be frustrating and overwhelming at times. Dementia is a complex disorder, and it doesn’t come with an instruction manual. Each case can be different depending on the person and the severity of the disorder.
We've put together a guide to help caregivers better understand dementia and the behaviors that often come with it. We've also included helpful tips for taking care of people with dementia that will help reduce stress and provide you with more knowledge and an expansive skill set.
What is Dementia?
To understand dementia behaviors, you need to better understand the disorder itself. Unlike other illnesses, dementia isn’t a specific disease; rather, the term dementia is an umbrella term used to describe multiple symptoms associated with memory decline and additional losses of other critical abilities that affect a person’s everyday life and make common activities difficult or impossible to perform.
There are a variety of dementia types, but we will be focusing on the most common one: Alzheimer's disease. Alzheimer’s disease makes up 60 to 80 percent of dementia cases and is expected to affect nearly 10 million people by the year 2050.
For caregivers to understand dementia behaviors, it’s useful to know more about the stages of Alzheimer's and the symptoms and caregiving advice for each. Here is a breakdown of the three main stages of dementia.
Early Stage of Dementia
In this stage, symptoms are just barely beginning to present themselves, and the person affected will likely still be independent, driving themselves, living alone, etc. However, small signs will begin to arise, such as forgetting names or being unable to remember common object names or how to perform a common task. According to Kindly Care, people experiencing the first stage of dementia will likely assume this decline in memory is because of stress or simply growing older, but as they reach the later stages of dementia, they will realize these were the first signs of the disease. Mid or early stages of dementia can last years, so there isn’t a particular time frame you can expect. All cases are different.
- Confusion and disorientation
- Mood swings
- Mild memory loss
- Moderate fear and paranoia
- Decreased awareness
Caregiver Tips for the Early Stage of Dementia
Be aware of the denial stage for you as well as for the person suffering from dementia. It may be hard to believe at first, and you both will likely have difficulty accepting the disease and the challenges it will bring. Try not to waste time denying it and instead come up with a plan to promote a positive quality of life for both of you. Wasting time denying the reality of Alzheimer's disease can affect your ability to care for the person suffering from dementia and could negatively affect your relationship.
Find a Balance
Because it is so early on in the disorder, you don’t want to overwhelm people suffering from dementia or be too aggressive with your care. They likely can still take care of themselves, and the most difficult part will be finding a balance between giving them the space they want and the assistance they need. If the individual is still working, talk to the individual and decide when the best time to retire would be for him or her. You don’t want there to be too much stress on the individual, especially when stress could definitely be linked to dementia.
Take Control of Stress-inducing Tasks
Consider taking over stress-inducing tasks that will likely frustrate someone experiencing dementia. For example, paying bills or going grocery shopping are common tasks that may prove to be too much work now that they are suffering from the early stages of dementia. If they don’t want to give up the task completely, suggest simply helping out or being there while they complete the task themselves.
Create a Help Signal
The Alzheimer's Association suggests coming up with a help signal. This is a cue or phrase you use to determine if the person with dementia needs your help or not. For example, if the individual can’t remember the name of something, don’t jump in right away; he or she may get frustrated with the lack of control to recall the name on his or her own. If you come up with a help signal that you both agree on, you can use phrases like “is there anything I can do to help?” instead of interrupting immediately. This will give people suffering from dementia the opportunity to think for themselves, while also being a polite and respectful way to offer assistance if they do desire it.
Practice Open Communication
It’s often hard for people struggling with dementia to talk about their feelings and difficulties because they feel frustrated or embarrassed. Create a safe environment for them to express their feelings and let them know they are not alone. Practicing open and effective communication from the beginning will make it easier for people with dementia to be honest about the severity of the disease and the challenges they may be facing.
As dementia worsens, mobility will likely decrease. Take advantage of the individual’s abilities now and promote exercise. Because you don’t want to overdo it, decide what type of exercise will be best for the individual and how much. Light exercises that may be beneficial could include gardening, walking, dancing, swimming, etc.
Purchase a Medical Alert Device
Consider purchasing a medical alert device for the individual with dementia. This provides independence and will be a resource to use to call for help if an emergency arises. This can also provide loved ones with peace of mind that the person with dementia won’t ever be alone without help if he or she needs it. Top medical alert companies like Medical Guardian even have fall detection technology, so you don’t have to worry about a fall going unnoticed if they are home alone. There are different types of medical alert systems that even have GPS tracking installed, which will tell you where the individual is at all times.
Moderate or Middle Stage of Dementia
In this stage, symptoms from the early stages of dementia will begin to worsen. Individuals with Alzheimer's disease will experience confusion and more severe memory loss, with a decrease in effective judgment. Kindly Care suggests this could include not knowing what day of the week it is or not knowing where they are. Personal details, such as phone numbers and birthdays, will also be difficult to recall. This stage will likely give people suffering from dementia risk of wandering, and they will need more assistance and care to complete regular activities in their daily lives. This stage of dementia often lasts the longest, according to Sunrise Care.
- Inability to do daily tasks
- Severe mood swings, including frustration and anger
- Changes in sleeping patterns
- Problems with speech and/or language
Caregiver Tips for the Middle Stage of Dementia
It’s important to note that people in this stage of their dementia will likely experience a great deal of paranoia and fear. Instead of saying something along the lines of “You are worrying for nothing”, try to validate their feelings and understand how they are feeling. This will help them open up to you easier and will likely make caregiving a lot simpler and rewarding.
Take Care of Yourself
Don’t forget to take care of yourself. This stage of the dementia process will likely be extremely difficult, and not taking time for yourself could cause a burnout. Take small breaks, even if they are brief. Also, consider hiring help or asking a loved one or friend to assist you with caregiving.
Work on Connecting
Although it may be difficult for the person with Alzheimer's to effectively communicate, still talk with him or her and make an effort to connect as best as possible. The Alzheimer's Association recommends speaking slowly, using a gentle tone, maintaining eye contact, and giving the person plenty of time to respond. Also, be specific with your questions. For example, instead of giving an open-ended question like “What would you like to do today?” instead make the question more specific and ask something like “Would you like to take a walk?” This will promote simpler and more effective conversations between both of you.
CareGiver.org recommends using humor whenever possible, as most people with dementia will retain their social skills and will likely enjoy laughing with you, even when they can’t communicate very well.
Take Advantage of Training Courses
Consider care training resources to gain more knowledge and support to better understand and care for a person experiencing dementia.
Severe or Late Stage of Dementia
In this last stage of dementia, people will experience severe declines in their physical functioning as well as their cognitive functioning. They will lose most or all of their ability to communicate effectively. Although they will still be able to speak, it will likely be incomprehensible. Losing most of their physical functioning as well, they will be unable to eat and swallow, and they will not be able to control their bladder or bowels. The majority of people in this stage require full-time assistance.
- Limited communication abilities
- Severe decrease in mobility
- Extreme health issues
- Difficulty recognizing familiar faces
- Frustration and irate behavior
Caregiver Tips for the Late Stage of Dementia
Have a Plan
Unfortunately, Alzheimer’s often leads to death and although this is extremely difficult to deal with and comprehend, you want to make sure the person suffering from dementia will be taken care of and you have a plan in place for such a situation. Consider enlisting the individual in palliative care or hospice care. This can provide a great deal of support for not only the patient but the entire family as well. This type of medical assistance will also give more information on where people are at in the stages of dementia and whether or not they are near the end of their life.
Try Sensory Connections
National Institute on Aging suggests creating sensory connections for individuals with Alzheimer's, especially in the last stage of the disease. This could include physical touch, massages, music, white noise, etc. These types of sensory activities could provide comfort and could lessen agitation.
Focus on Quality of Life
Although memory loss and the inability to communicate will be extreme at this point, it is still helpful for a person with dementia to feel connections with loved ones. This supports a better quality of life for the individual as well as helps loved ones cope with this difficult time. Here are a few options the Alzheimer’s Association recommends for sparking a connection.
- Playing their favorite music
- Reading stories/books to them that they used to love
- Looking at family photos together
- Brushing their hair
Look for Non-verbal Cues
Because verbal communication is limited, pay attention to nonverbal cues to understand how the individual is feeling. This will give you a better idea of mood changes and signs of discomfort or pain.
Consider Professional Care
Consider part- or full-time professional care if you are unable to care for the person with dementia yourself. People in the last stage of dementia likely need 24-hour assistance, and that is too much for one person to handle by themselves. Having professional help all or part of the time will lighten your burden and will make for more effective care.
Patience is Key
Regardless of the stage of dementia, someone is in, it’s important as a caregiver to have patience and to take it one day at a time. All cases of dementia are unique, and having the patience to understand the behaviors and feelings of the person suffering will help you provide better more quality care.