What It Feels Like To Have Alzheimer’s
I’ve been publishing articles about Alzheimer’s disease for nearly two years. And I have to admit almost all have focused on the caregiver. Many have focused specifically on what it feels like to be a caregiver.
We can feel contentedness, pride and joy. We can feel elated whenever we make a meaningful connection with our loved one.
We can also feel sadness and loneliness. At times we are angry, depressed and frustrated at other times we may be embarrassed by our loved one’s behavior and we can feel sorry for ourselves that we have to go through this experience. The list goes on and on.
But how does the person with dementia feel?
Although I’ve thought and written about how to deal with various behaviors that result from the feelings of people with dementia, I am embarrassed to admit I’ve spent very little time contemplating how these people really feel deep down inside.
I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer’s caregiving. And I published an article here about her recommendations for planning activities for people with dementia.
At the end of the interview I asked her to recommend what she considered the best book for Alzheimer’s caregivers to read. She suggested we read The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel.
So I bought the book and started reading. And that’s when I realized what I’ve been unwittingly ignoring. I’ve been ignoring what it must feel like to have dementia.
They continue:
Repetition In Alzheimer’s Patients
Alzheimer’s caregivers can feel like they are losing their own minds to dementia, as they must keep answering the same questions repeatedly. But patients who repeat themselves just want to be reassured, Rubinstein explains. One way to cut down on anxious questioning is to be strategic about discussing schedules. Don’t announce plans days or weeks in advance. Instead, just arrange the details and tell your loved one on the morning of a medical appointment or other event. Apologize if necessary for the “short notice.”
Dementia Signs Symptoms Testing And Diagnosis
On Vanishing: Mortality, Dementia, and What It Means to Disappear by Lynn Casteel Harper.
“A compassionate collection of essays examining dementia from an unusually hopeful point of view . . . Harper moves smoothly between abstract reflections and concrete experiences, reflecting often on the effects of dementia on her grandfather and on her relationship with him, her fears that a genetic link to the disease may have been passed down to her, and her encounters with many individuals, all described in strikingly specific terms, surviving dementia in their own ways . . . Moving insights into a situation many will face.” Kirkus Reviews
“This inspiring work takes us far from our often-arrogant efforts to vanquish dementia to seeing human vanity in another light. How do we envision vanishing and disappearance in the face of progressive cognitive decline? In On Vanishing, Lynn Casteel Harper holds a mirror to society and asks us to reflect . . . Just what does dying with dementia tell us about the human condition, both in the details of individual lives and in the grand scope of society? . . . In these troubled times of environmental deterioration and social injustice, can we learn to create more compassionate civilizations that celebrate caring?” Peter J. Whitehouse, MD, author of The Myth of Alzheimer’s Practical Dementia Care For health care professionals.
How to avoid a catastrophic reaction
Specific approaches for aggressive behavior
How to deal with disruptive behaviors
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Changes In Behaviour May Include:
- Distress or agitation this may be because the person is confused about where they are, who they are with or what they are meant to be doing.
- Sundowning the person may become more agitated and confused in the late afternoon and early evening. This can be caused by a range of factors including disturbance to the body clock, too much or too little sleep, or medication. It may help to give the person something meaningful to do at this time of day and make sure the environment is suitable . Going outside during the day can help.
- Aggression the person may react aggressively for a range of reasons for example, they may be in pain or feeling threatened, may not understand what is going on or trying to communicate a need.
Preventing and managing aggressive behaviour
Find ways to prevent and manage aggressive behaviour in the future, to help both you and the person with dementia.
Agitation In Alzheimer’s Patients
Many times, Alzheimer’s caregivers are faced with their loved one’s inexplicable, intractable agitation, a common Alzheimer’s symptom. Knowing their history might provide clues. For example, a woman who once eagerly anticipated her husband’s arrival home from work each day might calm down if you talk to her about how good it felt for him to arrive and reassure her that her husband will be home soon. If he is deceased, there’s no reason to mention that, Rubinstein says.
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Aggression In Alzheimer’s Patients
“Oftentimes, aggressiveness is just frustration because they aren’t getting their point across,” Rubinstein explains. Dementia results in increasing difficulty with communication, so figuring out how best to communicate with your Alzheimer’s patient will help. Alzheimer’s caregivers might create a picture book or photo menu to help your loved one point out what they want to eat or drink or who they are thinking about. Keep air horns around the house and blast them to stop physical aggression in its tracks, and don’t hesitate to call 9-1-1 for help if this Alzheimer’s symptom turns dangerous.
Dementia Patients And Their Families Struggle With Uncertainty
When will things get better?
This is a question that dementia patients and their family members ask often. Everyone wants answers, but there are few certainties to be had when dementia is involved. Experts do their best to explain all the nuances of the disease, but do their answers coincide with what a patient actually goes through? Can they truly tell you what its like to be a person living with this horrible condition?
Here is my take on this disease from a patients perspective: Things will never get better. The difficult behaviors and frustration will sometimes subside. You will see glimpses of lucidity and your loved ones old personality from time to time. But, better simply is not possible with this progressive condition.
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Taking Too Many Or Too Few Medications
Alzheimer’s caregivers have to be creative when giving medication for Alzheimer’s symptoms or other conditions. Loved ones who insist that they missed a dose can be shown their medication dispenser or a chart, or even be given a placebo, such as a tic tac. On the flip side, those who refuse to take their meds might need to be given them in liquid formulations that can be added to favorite foods or drinks check with the prescribing physician to find out what foods are compatible. If pills are required, you’ll have to watch to make sure they are swallowed.
Dental Skin And Foot Problems
Dental, skin, and foot problems may take place in early and moderate stages of Alzheimer’s disease, but most often happen during late-stage Alzheimer’s disease.
Dental problems. As Alzheimer’s disease symptoms worsen, people will need help taking care of their teeth or dentures. Brushing and flossing help to maintain oral health and reduce bacteria in the mouth, which may decrease the risk of pneumonia.
Make sure the person’s teeth and teeth surfaces are gently brushed at least twice a day with fluoride toothpaste. The last brushing session should take place after the evening meal or after any medication is given at night. You may find that using a child’s size toothbrush is easier for the person.It is also best to floss once per day, if possible. If this is distressing to the person, an interdental brush, which is a small brush designed to clean between the teeth. Try to check the person’s mouth for any problems such as:
- Sores
- Food “pocketed” in the cheek or on the roof of the mouth
- Lumps
Be sure to take the person for regular dental checkups for as long as possible. Some people need medicine to calm them before they can see the dentist. Calling the dentist beforehand to discuss potential sensitivities may also be helpful.
Skin problems. Once the person stops walking or stays in one position too long, he or she may get skin or pressure sores. To prevent them, you can:
To check for pressure sores:
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Kind Calming Ways To Respond To I Want To Go Home
These suggestions will put you on the right track, but its a good idea to get creative and come up with responses that are tailored for your older adults history, personality, and preferences.
1. Reassure and comfort to validate their needsSometimes saying I want to go home is how your older adult tells you theyre tense, anxious, scared, or in need of extra comfort.
Approach your older adult with a calm, soothing, and relaxed manner. If you remain calm, it often helps them calm down too.
If they like hugs, this is a good time for one. Others may prefer gentle touching or stroking on their arm or shoulder or simply having you sit with them.
Another way of giving extra comfort and reassurance is to give them a soothing blanket, therapy doll, or stuffed animal.
2. Avoid reasoning and explanationsTrying to use reason and logic isnt recommended when someone has a brain disease. It will only make them more insistent, agitated, and upset.
Dont try to explain that theyre in their own home, assisted living is now their home, or they moved in with you 3 years ago.
They wont be able to process that information and will feel like youre not listening, you dont care, or that youre stopping them from doing something thats important to them.
3. Validate, redirect, and distractBeing able to redirect and distract is an effective dementia care technique. Its a skill that improves with practice, so dont feel discouraged if the first few attempts dont work perfectly.
What To Do About Body Jerking
Sudden twitching or jerking, known as myoclonus, is another condition that sometimes happens with Alzheimer’s. The person’s arms, legs, or whole body may jerk. This can look like a seizure, but the person doesn’t pass out. Tell the doctor right away if you see these signs. The doctor may prescribe one or more medicines to help reduce symptoms.
Read about this topic in Spanish. Lea sobre este tema en español.
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The Brain And Body Connection
Though the cause of Alzheimerâs is not known, doctors think the symptoms of the disease are caused by a buildup of harmful proteins in your brain called amyloid and tau. These proteins form large clumps, called tangles and plaques. They get in the way of normal brain function and kill healthy cells.
The damage usually starts in the area of your brain that forms memories. People with early-stage Alzheimer’s disease often have trouble remembering things. As the disease gets worse, the plaques and clusters also appear in the parts of the brain in charge of bodily behaviors.
Everyday activities like walking, eating, going to the bathroom, and talking become harder.
The effects of the disease will differ for each person as it gets worse. The pace can be slow. Some people live up to 20 years after a diagnosis. The average life expectancy, though, is 4 to 8 years.
How To Find Help For Caregiving
As the person moves through the stages of Alzheimer’s, he or she will need more care. You may not be able to meet all his or her needs at home anymore. It’s important to know your limits, take care of yourself, and to seek help whenever you need it. Learn more about getting help with Alzheimer’s caregiving and finding ways to care for yourself. If caring for the person has become too much for you, you can also learn more about finding long-term care for a person with Alzheimer’s.
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When To See A Doctor
Forgetfulness and memory problems dont automatically point to dementia. These are normal parts of aging and can also occur due to other factors, such as fatigue. Still, you shouldnt ignore the symptoms. If you or someone you know is experiencing a number of dementia symptoms that arent improving, talk with a doctor.
They can refer you to a neurologist who can examine you or your loved ones physical and mental health and determine whether the symptoms result from dementia or another cognitive problem. The doctor may order:
- a complete series of memory and mental tests
- a neurological exam
- brain imaging tests
If youre concerned about your forgetfulness and dont already have a neurologist, you can view doctors in your area through the Healthline FindCare tool.
Dementia is more common in people over the age of 65, but it can also affect younger people. Early onset of the disease can begin when people are in their 30s, 40s, or 50s. With treatment and early diagnosis, you can slow the progression of the disease and maintain mental function. The treatments may include medications, cognitive training, and therapy.
Possible causes of dementia include:
- Alzheimers disease, which is the leading cause of dementia
- brain damage due to injury or stroke
How The Body Shuts Down
As your body declines it raises the risk for other health problems.
- Infections may develop as your immune system begins to fail.
- Pneumonia can set in, especially if you inhale food or drinks by accident.
- Injuries from falls are more likely to happen.
Most people with Alzheimer’s disease die from pneumonia, another infection, or a heart attack.
It’s best to have conversations early on about how you’d like to be cared for. These conversations can be hard, but having a plan can make it easier for you and your family.
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Inside The Mind Of Dementia
What does it feel like to have dementia? Thats a question that researchers, scientists and family members of loved ones have asked time and time again. What is really going on in the mind of the person? How do they view the world? Do they understand whats happening, or do they think that everybody else are the ones acting strange? The answer to that depends on the person and what stage of dementia they are in.
No two people experience dementia the same way, says Erica Labb, Executive Director of Bridges® by EPOCH at Westford. Some individuals could suffer significant memory loss but remain fairly physically healthy. Others can deteriorate at an incredible speed. It can depend on what type of dementia a person has, their health history and many other intangibles that we arent even aware of yet.
But thanks to research and a growing awareness of dementias such as Alzheimers disease, we are gathering a clearer picture of what it feels like to have dementia, particularly in the early stages of the disease. If a person is in the early stages of dementia, they are still capable of many things, which makes it easier for them to record their emotions, feelings and experiences, says Erica. There are many first-hand accounts, speakers and advocates out there who are open and honest about their experience, and theyre helping change the outlook on what dementia is and what it isnt.
What Is Alzheimers Disease
Alzheimers disease is a progressive degenerative disorder that causes brain cells to shrink and die. About 5.8 million people in the U.S. age 65 and older live with Alzheimers.
Memory loss and confusion are the primary symptoms of the disease, and it is the most common cause of dementia in the elderly.
Early signs of Alzheimers include forgetting recent events or conversations. Over time, these memory lapses become more frequent, and symptoms gradually become noticeable. As the disease progresses, a person with Alzheimers will develop severe memory impairment and lose the ability to perform activities of daily living.
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Support Groups For Dementia Patients And Caregivers
The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love From Caregiving in the Age of Long Decline . Ours is an age of long decline and slow loss. Her mothers final death, then, came both hard and as a relief. Alzheimer’s: Helping children understand the disease It can be a confusing time for young children when a loved one develops dementia. Ease your kids’ fears and answer their questions about Alzheimer’s disease.Alzheimer’s: Smoothing the transition on moving day Moving a loved one who has Alzheimer’s into a new home or facility is a daunting task. Here’s help planning ahead.Alz Connected Dementia Friends. See Changing the Way We Look at Dementia In November, six people with Alzheimers disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn. One by one, they talked about what it was like to live with dementia in deeply personal terms. Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what theyd learned.Support groups: Make connections, get help Memory cafés What is a memory café? An Alzheimers, dementia or memory café is a monthly gathering of individuals with memory loss along with their caregivers, and/or friends and family in a safe, supportive, and engaging environment. The cafe gives everyone a welcome break from the disease.