Dementia can be caused by many different conditions. While most of them involve an eventual decline in abilities, the stages are not cast in stone. It’s a bit of a watercolor-like transition, flowing from one stage to the other. Symptoms from the middle stage show up earlier in some conditions and individuals, or later in others.
Alzheimer’s is the most predictable of the conditions that result in dementia symptoms. It’s also the most common. (Fifty percent of people with dementia have Alzheimer’s.) As such, it’s often the yardstick when talking about stages.
Vascular dementia (generally arising from strokes) accounts for 10% to 20% of dementia diagnoses. Its progression is more sporadic. (Strokes or ministrokes affect different parts of the brain and occur at irregular frequencies.) Rather than a gradual decline, strokes have more of a stair-step pattern. There’s a drop and then stability for a while. Then another drop if there’s a new stroke-like event. (Although some people have little strokes that cause a more gradual decline. It’s complicated!)
Acknowledging that stages are a bit fluid, by the “end” of the early stage, you should be planning for the person you care for to live with supervision twenty-four hours a day. They can still walk and communicate and engage socially. But they cannot reliably handle the more complex tasks of daily life that can be dangerous if mishandled: Cooking on a stove, driving, paying bills, or managing medications.
By the end of the middle stage, the person you care for will need help with intimate personal tasks such as bathing and dressing.
The middle stage is typically—but not always—one of the more confusing and emotionally difficult, for both families and the person with dementia. But there are strategies to help make it easier.
If you would like more information or to discuss support strategies, give us a call at (716) 204-1063.
The middle stage of Alzheimer’s—the most predictable form of dementia—is the longest. It typically lasts up to four years. It is characterized by erratic behaviors that are often embarrassing or confusing to family members.
The person with dementia is at this point unaware of their deficit. Often, they are anxious, scared, and angry. They may lash out irrationally. (Rational thought isn’t available to them like it used to be.) Social inhibitions—manners—are also diminishing.
Then again, some go with the flow. A previously tense and critical parent may be more inclined to let things slide. They somehow accept that they don’t understand everything, and that’s okay with them.
Middle stage signs and symptoms can include the following:
More problems communicating. In the earlier stage, they had trouble finding words. By the middle stage, they have trouble understanding what is being said to them. They may still be able to read, but following the thread of a conversation is difficult. Even capturing the meaning of the words can be elusive. People who were raised speaking a language other than English may begin speaking their original language instead.
Start looking for the meaning behind their words. Repeated questions such as “When are we leaving?” are not so much about the literal leaving time, but reflect anxiety about change. In addition to not remembering the answer you gave them ten minutes ago, their anxiety remains and so they ask again. They are in need of reassurance as much as they want a specific answer.
Memory loss goes further back. In the early stage, your loved one was unable to remember recent events, or new instructions, or new people they had just met. Now they may begin to forget things from further back in their past.
They might confuse a daughter for their mother. (In fact, she might look much the way their mother did twenty or thirty years before.)
They may no longer be able to recall the name of even close relatives or a spouse. (Heartbreaking for family, but it’s not personal. It’s the disease.)
Making choices is overwhelming. On one hand, they may want the respect and independence of deciding what to wear or eat. On the other, it’s difficult to weigh pros and cons, especially across many options.
Dressing and grooming become more challenging. In addition to choices, these tasks involve sequential steps, which can be quite challenging.
The person you care for may put clothes on in the wrong order (underwear on top of pants).
Or they may choose inappropriate clothing (a fancy dress for going outside).
Bathing is not only complicated, but also uncomfortable. The shower is noisy. The air may be cold when wet. Your loved one may no longer understand the importance of hygiene and resist cleaning up altogether.
There are issues of modesty and privacy with both dressing and bathing, especially if your loved one doesn’t always remember who you are.
Eating can be problematic.
Your loved one may want only sweets.
They may eat with their fingers (forks, spoons, and knives require a lot of concentration!).
What they like one day, they refuse the next.
Some have trouble if there is a lot of clutter on the table. Too many choices. The brain gets overwhelmed.
Remembering medications is difficult. A pillbox may have worked well in the early stage, but now your relative will need reminders. And keeping track of what day it is will be too much. Someone else will also need to order refills as needed. That’s just more organization than they can manage (even by the end of the early stage).
Driving is unsafe. Depth perception, quick reflexes, and remembering the rules of the road are no longer available. Your loved one can get too easily lost and distracted. They are a hazard to themselves and others.
Increased agitation and restlessness. While there are many things your relative can no longer do at this stage, they do remember and understand meaningful activity. (Many will insist they need to get dressed and go to work.) They want to be useful and to receive respect. They also have pent-up energy they need to burn, physically.
Sundowning, switching night and day, wandering. It’s quite common for people in the middle stage to get especially restless in the late afternoon or evening. They are tired, and the impending dark is scary. This tendency is called “sundowning.”
As they become less connected to time of day, the person you care for may become more active at night and sleepy during daylight hours.
They might also start to wander, with great risk of getting lost or even dying of hypothermia if they end up out late at night in the winter.
Toward the end of the middle stage, you might also notice these changes:
Sleep irregularities and wandering are more common.
Paranoia and accusations may emerge, with potentially combative overtones (for example, aggressive pushing or hitting because they don’t want to bathe).
Physical and emotional outbursts may occur more often.
Sexual comments or displays may be made in public as inhibitions diminish.
They may have incontinence of the bladder and/or bowel.
The experience of those in the middle stage of dementia
This is often an extremely confusing and emotional stage for people with dementia. The world does not make sense to them and they don’t know why. They try to apply order to chaos, but life doesn’t seem to cooperate.
How did their glasses end up in the refrigerator, for instance? They know they always set them on the dining room table. Having no memory of putting them in the refrigerator themselves, the only plausible explanation is that somebody else must have moved them!
Accusations and what we would call “paranoia” are common. The rug feels like it’s been pulled out from under them.
Most people in the middle stage are unaware of their impairment. Even if they received a diagnosis earlier, they just don’t remember. And they aren’t trying to “play dumb”. Literally, the “memory Velcro” does not stick any more. They also are losing their rational (logical) thinking. Trying to reason with them is fruitless. Again, they aren’t being stubborn, they just don’t have the pathway in the brain anymore that helps them understand “A leads to B, which then leads to C.”
If you think of dementia like winding the clock backwards in brain development, the middle stage is like losing the lessons of adolescence. Emotional regulation is diminishing, so they are more volatile and more impulsive. Social inhibitions (manners) can go out the window. They have a hard time with the loss of independence. Lacking a strong “executive” function in their brains, they rely a lot on intuition. Their emotional sensitivity is keen. They understand what respect and disrespect feel like. They are used to having choices and autonomy. It’s difficult to have it taken away.
Physically restless. Anxiety can manifest in more physical agitation. You might see this as pacing, or wandering, or wringing of hands. With less and less to do for themselves, they search for meaning and purpose. People with dementia can get bored! They need stimulation, but the right kind. Activities that spark their interest but are not too taxing mentally.
More vulnerable to others. With the world becoming more confusing, your loved one may seek security and comfort. They may cling to you and follow you around (called “shadowing”). They may also resonate with individuals who seem to take a special interest in them, making them an easy mark for con artists who are experts at cultivating a protective, secretive relationship.
“Be here now.” While many people in the middle stage of dementia are distressed and disoriented, some people actually seem very contented. They don’t notice the things that used to worry them. Life is really as good as they are feeling at the present moment. There isn’t a lot of past and future to bring on anxieties. If they are physically comfortable right now, life is good!
How family caregivers can help someone in the middle stage of dementia
Patience, sensitivity, flexibility, and a sense of humor are a great relief for families in this stage. Look for ways to make life predictable and secure, physically active, but not rushed or stressed. If you can be more in the present moment and look for opportunities for joy, the person you care for is very likely to reflect this calm and contentment.
Communication. When asking your loved one to do something, try these strategies:
Use simple sentences.
Reduce choices to only two (“Would you like to wear the blue sweater or the brown sweater today?”).
Use nonverbal cues, as over time they lose their ability to understand language.
Pay attention to your tone of voice, facial expression, and body language. The person you care for is more focused on the feeling you are communicating than the content.
Avoid being in a hurry or pressuring them. They will pick up on the stress and get flustered themselves. Or resist.
When they speak to you
Consider the emotions behind the words. You may have to be a bit of a detective as they can’t always put what’s bothering them into words.
Repetitive questions are annoying! But common. Sometimes they forget that you told them the doctor’s appointment is at 3:00. Other times they keep asking because they are actually anxious. Sitting down together and doing something soothing may get to the root of the questioning.
Safety. Arrange for twenty-four-hour care. This may mean moving in with family members if your relative lives alone. It could mean hiring in-home caregivers if your loved one can afford to age in place. Or hire caregivers to give you or a spouse some respite during the week. (It’s too much to care for a person with middle or late dementia 24/7 without a break.) If home care isn’t feasible, consider moving to an assisted living or memory care unit. Talk with an Aging Life Care Manager to learn about local options.
Driving is definitely not safe in the middle stage. This is a tough one. Reasoning won’t work. They don’t have an awareness of their deficits. Even the DMV taking away their license won’t stop them from driving if the car is still present.
Hide the keys.
Let the air out of the tires.
Move the car elsewhere and use their forgetfulness to your benefit: “The car’s in the shop, Dad.”
Medication management. They will need reminders.
This is often the stage when people move to an automatic pill dispenser, although someone needs to track that the day’s pills actually ended up in your loved one’s mouth.
Someone else will need to manage refills.
Remove hazards around the home. Top on the list is removing access to the stove. Many a housefire is started because a burner was left on unattended. You could unplug an electric stove or consider a device that turns off a burner when there’s been no movement nearby for 10 minutes or so. Knives should also be removed. In addition, any guns in the house are best taken away.
Be watchful of family members or “new friends” who suddenly seem very attentive. Sadly, 62% of financial abuse of the elderly is from relatives who take advantage. But there are others who have perfected the art of befriending a vulnerable elder and syphoning off their money.
Look for unexpected withdrawals or expenses on bank and credit card statements. Put a freeze on your loved one’s credit account so you will be contacted if someone steals your loved one’s identity and tries to open an account in their name.
Emotional outbursts or aggressive behaviors. These are the most trying. They often occur when the person you love feels tired or overstimulated.
Look for triggers. Do they act out around bathing? Do they have meltdowns when you are in a busy, crowded place such as a shopping mall? Is there a particular time of day?
What is the emotion behind the words. Think creatively. Could they be responding to something different from what their words literally indicate? (“I want to go home” might mean they want to be in their childhood home with their mother.)
Are they in pain? They could have a bladder infection, a pebble in their shoe, or a headache and not be able to tell you in words, even if you ask directly. Take their temperature. Feel for any pins in their clothing or shoes that are too tight.
Validate their feelings, then change the subject and lead them out of the room. If pain is not the issue, then try distraction and moving to a new environment. For example: “I don’t like that either, Mom. Hey, what do you think about having a sandwich and sitting out on the porch? Look, the birds have come back to the bird bath.”
Pay attention to your own emotions. That includes facial expression, tone of voice, and body language. People with dementia often mirror the feelings of those around them. If you are angry or frustrated, the person you care for will likely absorb and reflect back the same feelings.
Create a daily routine. The more the person you care for can rely upon habit, the less stress they will feel. You will come to learn which times of day work best for which types of activities.
Promote independence. Let them do what they can as much as they can.
Resist the temptation to treat them like a child. They know the difference, especially if they are your parent, and will resist you.
Be patient and let them fumble. If safety is not an issue, then let them keep trying until they ask for help or become obviously frustrated. It’s more important that they get to accomplish something than it is that they do it quickly or “right.”
Don’t rush them. This just gets them more flustered.
Problems with dressing
Remove clothes from the closet that are rarely worn (formal dresses or suits) or out of season. It reduces choices.
If they have a favorite shirt they want to wear all the time, get five more. They can wear the shirt but you can have a few in the laundry waiting to be washed.
Set clothes out on the bed stacked in the order they are to be put on: Underwear on top of pants so the underwear will go on first.
Problems with bathing
Heat the bathroom ahead of time so it’s not cold.
Run the bathwater before bringing your loved one into the bathroom. (The noise can be distressing).
Consider a sponge bath instead of a shower. Use rinseless shampoo for the hair. Keep exposed parts of the body that are not getting cleaned at the moment covered with a towel for modesty and warmth.
Problems with eating
Serve finger foods.
Serve one course at a time, the most important (protein) first.
Do not rush meals.
Keep the table uncluttered.
Eat with your relative to make it a positive social experience (emphasize the social).
Consider less-formal eating arrangements. Allow for “grazing.”
Sundowning. This is the tendency to get anxious and agitated in the late afternoon.
Turn on lamps and pull the curtains about an hour before sunset.
Do stressful activities, for example, bathing, in the morning, when your loved one is more rested. Keep afternoon and evening activities fun and lightweight.
Provide stimulating activities within their abilities. Think of interests they used to have and make adaptations. People with dementia like to be useful, to perform tasks with meaning. Plus, they will be more likely to wander if they are bored. Get inventive. Use their forgetfulness to your benefit:
Fold laundry. (Take the folded laundry to the back room. Fluff it up and bring out the same basket again.)
Rake leaves or sweep the walkway. (Scatter the leaves again for raking up later in the day.)
Sort buttons (for someone who used to sew). Sand a piece of wood (for someone who used to work with wood).
Being physical during the day. This will help your loved one sleep better at night. While they still have good balance, walking is great exercise. But they need to walk with someone else as they are likely to get lost if on their own.
Self-care for family caregivers of persons in the middle stage of dementia
The middle stage is the longest, and in many ways the most emotionally turbulent. Caring for someone with dementia literally “defies reason.” They have lost their ability to access rational thought, so they are often scared, disoriented, and sometimes angry. Without their logical brain, they rely a lot on their intuition, so they are very sensitive to your emotions. Learning to stay calm yourself will make your life easier as they are likely to mirror whatever emotion you are feeling. Making their life easier makes your life easier!
Maintain your own physical and mental health. It’s extremely common for the family caregiver of a person with dementia to end up in the hospital. (Stressed spouses are 63% more likely to die earlier than their noncaregiving peers.) Similarly, 46% to 59% of family caregivers are depressed. The stress is just too much. For the sake of your loved one and your own well-being, you need to make your health a priority. It’s not selfish. It’s essential!
Get plenty of sleep (seven to eight hours a night).
Eat a well-balanced diet.
Avoid overuse of alcohol, tobacco, or drugs. Instead, develop strategies for healthy stress management.
Get regular physical exercise.
Stay in bed when you are sick (and get help).
Keep up with your own doctor appointments and treatments.
Join a dementia caregiver support group. If you do nothing else, listening to the stories of others will help you recognize that you are not alone. You will gain valuable tips from people in the same boat as you. It’s common for family caregivers to feel they are not doing enough, to feel angry and frustrated, and then to feel guilty. A support group is a safe place to vent. Also to learn about healthy coping strategies and local resources that others have found helpful.
Take breaks! It may feel like it’s impossible, but there’s always a way. People who have gone through the caregiving journey always say that in hindsight, they wish they had prioritized taking breaks. They truly needed it. It is exhausting to be responsible 24/7 for an adult-size person who is not rational and is potentially a hazard to themselves. Add to that the emotions of watching a loved one lose their abilities and in many ways, their personality. It can be heartbreaking. You have to take time away so you can recharge your own batteries.
Get help. In order to take breaks, you have to get help. This may involve learning to ask others in your family for assistance. It might mean researching community programs. An Aging Life Care Manager is an expert in aging who can help you find the best local resources for your loved one. Whether it’s adult day care, a paid caregiver a few mornings a week, trading off with siblings, or some other arrangement, you are on a road to burnout—and your loved one will suffer—if you don’t get help and seek respite.
Maintain at least one interest outside your caregiving role. Maybe you can only subscribe to a magazine about your favorite hobby. You may have little time for much more than caregiving. But stay engaged at least a little bit. Remember to schedule in activities that make you smile. You are more than a family caregiver—you need to keep one foot in that other life to stay balanced.
Think twice before you quit your job to do full-time caregiving. Even Justice Sandra Day O’Connor regretted her decision to step down from the Supreme Court to care full time for her husband. (It was only a matter of six months before he no longer remembered who she was.) Financially, be aware that quitting midcareer will jeopardize your ability to save for your own retirement. These are key income-earning years for you! You can’t make them up later. Remember that there will be life after caregiving. Don’t sacrifice your future. Even if it costs money, do what you can to find alternatives. Quitting is going to cost you money also!
Stay connected to at least one friend. Whether you text daily or have a weekly one-hour Zoom call, you need to have a relationship with someone besides the person you care for. And while you may need to vent now and then, be sure that caregiving does not take up the whole conversation. (Save that for a caregiver support group.) You also need to laugh and remember what’s fun about life to stay balanced. If you are married and caring for a relative, take time weekly to do things alone with your spouse (a date night!). Don’t let caregiving intrude on your conversation during that time. Your spouse needs to know that they are a priority too. Similarly, if you still have children at home, dedicate some time each week to each one, giving each your undivided attention. There will come a time when caregiving is no longer a primary activity. Stay invested in the future you want to have with these also-important people in your family life.
Learn more about the disease and seek answers. The more you understand the situation, the better you’ll be at problem solving. There are resources and strategies for handling the difficult situations that arise when caring for a person losing their ability to control their emotions. Remember that whatever the person you care for says or does, it’s not them, it’s the disease. Don’t take it personally.
