Stages of Dementia
Many older adults over age 60, between 12% to 18%, experience subtle changes in memory or functioning. If the changes do not interfere with normal life activities, the person may live for decades with only mild cognitive impairment (MCI). Dementia differs from MCI in that it is more noticeable to others and involves impairment with memory, judgment and daily activities.
People diagnosed with dementia progress in three stages: early, moderate and late. The symptoms and rate at which someone progresses through the stages varies from person to person. Each stage is unique and comes with a host of changes in feelings, behaviors, skills and safety that require new approaches and strategies for daily care and communication.
Here’s what to expect in each stage:
In the early stages, called mild dementia, your loved one may function independently or begin to require some assistance in daily activities. Mild dementia often leads people to have difficulty remembering words and names, staying organized, making decisions, managing money or keeping track of medications. These cognitive changes are subtle at first, noticeable mostly to family and close friends.
This stage requires the least amount of physical care, yet it is often the most demanding of the care partner’s emotions and time. Both the care partner and the person who is experiencing the changes can feel overwhelmed by the dawning realization that life as we know it is changing, but it is typically the care partner who reacts first with a mix of fear, anger, sadness and grief. In addition, care partners begin to feel more anxiety, worrying about what will happen next or how they will cope. When the loved one does not accept the memory loss and demands to live independently, care partners are in a difficult position with few alternatives that satisfy both parties.
As a person enters the moderate stage, dementia symptoms become more pronounced. You may notice changes in behavior such as loss of inhibitions, paranoia, fatigue, extreme forgetfulness, confusion and wandering. At this stage, your loved one will need more assistance and environmental modifications. It is also common for people in this stage of dementia to become withdrawn; changes in the brain make it more difficult to process and make sense of what is happening around them, so social isolation feels more comfortable. However, isolation can have devastating consequences for someone with dementia. Socialization and stimulation are critical to improving quality of life, but both must be adapted to account for confusion and slower processing speeds. Caregivers can benefit from external support, especially help in the home; adult day programs and support groups. Depending on available resources for care and socialization, it may be time to start considering assisted living.
Although each stage of dementia presents a family with an array of difficult challenges and emotional losses, the late stage of dementia is the most physically demanding. Your loved one can no longer communicate and usually cannot recognize family members, which complicates interactions. Mobility, continence and skills like chewing and swallowing become impaired. Your loved one will require round-the clock care and supervision—exceeding the capacity of most families—and an environment adapted to 24/7 support for daily activities such as eating, getting dressed, bathing and toileting. As the dementia advances, caregiving will shift from cognitive to physical interactions, with an emphasis on comfort and soothing stimulation. Having a higher level of support with care and activities of daily living will make it easier for family members to focus on engaging with their loved ones in ways that create positive moments for both.
Communication Strategies for Caregivers
For most care partners, the role of caregiving comes on gradually. Over time, the relationship becomes increasingly dominated by one partner’s miscommunication, behavior changes and lapses in judgment, all complicated by a seeming absence of empathy. The result is one partner assuming a caregiver role for the other. There are rewards in this new role, but there are also hazards, mistakes, blame, anger and fear for the future. For most care partners, nothing in life has prepared them for this. Profound feelings of aloneness set in. One spouse described it: “I am spending full time taking care of my wife, but I am not much good at it. I feel like I have lost my lifelong companion, and at the same time, all our friends have pretty much disappeared.”
Fortunately, there are strategies or Cardinal Principles which can reduce some stress for both the care giver and the receiver.
Tips on how to communicate
When communicating with someone with dementia, do:
- Begin any interaction with a smile and a cheerful demeanor.
- Greet the person by name and give eye contact.
- Use short, simple sentences.
- Use body language to enhance the message, such as pointing or using gestures.
- Repeat, repeat, repeat, using the same words and a gentle tone.
- If agitation happens, stop and come back later.
- Ask for permission to help.
- Accept the blame and apologize whenever the person becomes upset or accusatory.
- Respond to feelings rather than words.
- Forgive yourself if your feelings become negative and spill out onto the person.
And keep in mind these "don’ts":
- Don’t lecture.
- Don’t reason.
- Don’t blame.
- Don’t remind them they forget.
- Don’t take it personally.
Handling Difficult Dementia Behavior
Responding to paranoia
Dementia causes confusion and memory loss, which may manifest in a loved one becoming uncharacteristically suspicious or accusatory, a type of paranoia. Accusations of theft, infidelity, bribery or other crimes can feel hurtful, unfair and untrue. It can help if you remind yourself that your loved one’s brain is just trying to make sense of an increasingly confusing world.
To handle paranoia:
- Listen to the fear
- Respond by taking it seriously
- Don’t try to talk them out of the fear
- Offer to help make the situation better
Coping with delusions
Delusions are fixed ideas and no amount of reason, cajoling or distraction will change the delusion. For example, a delusion could be unwavering belief that there are bugs in the shower or that someone lives with your loved one in their room. Because they’re fixed, the only way to cope with delusions is to work around it and accommodate it in some way. Here are some tips:
- Listen sensitively to the delusion.
- Take it seriously.
- Think of a solution that will accommodate it.
- Ask the person if that solution is okay with them.
Coping with hallucinations
A hallucination is when a person sees, hears, feels, smells or tastes something that is not there. Hallucinations can occur in the early stages of some Parkinson’s-related dementias and the later stages of Alzheimer’s-type dementia. Hallucinations can also be a side effect of fevers or medications. They may be frightening or benign. But whatever they are, it is important to have a physician evaluate the person and determine if medication is needed or if a non-drug approach will be sufficient. Here are some tips for coping with a hallucination:
- Listen to the feelings as well as the content of the fear.
- Respond to the feelings; if benign, you might say, “Isn’t that nice to see your daughter.” If frightening, you might say, “This is awful for you. Let’s see what we can do to fix the situation.”
- Attempt distraction, such as moving to another room or doing an activity.
- Be honest: “No I don’t see it, but I know you do.”
Coping with delirium
Delirium is an abrupt change in the brain that causes mental confusion and emotional disruption. It makes it difficult to think, remember, sleep or pay attention. Delirium often occurs during alcohol withdrawal, after surgery, due to medication, or when experiencing dehydration or dementia. If you suspect delirium, you must contact your loved one’s physician.
"Sundowning" is not a formally recognized condition, and there is no standard definition for sundowning or its symptoms. However, sundowning in general refers to trouble sleeping or increased confusion, restlessness, anxiety or disorientation that lasts from dusk throughout the night.
Sundowning is thought to be due to some combination of physical and mental exhaustion from the day, disruption to our biological clock, a weakening ability to distinguish dreams from reality, or reduced visual perception resulting in upsetting shadows or difficulty seeing in dim light. Consequently, symptoms tend to grow more severe as dementia progresses. There is no single approach that works best for handling sundowning. Be aware of triggers and make modifications to avoid those triggers.
Common triggers: A heavy evening meal, loud music, TV shows, poor lighting, darkness viewed through the windows at night, or alcohol/caffeine consumption can all be triggers for sundowning.
Strategies for avoiding sundowning: Sticking to a regular routine and spending time outside in the sunlight can sometimes help avoid disrupting biological clocks. Often taking a walk together can help, because physical movement can be calming. In the evening, keep interiors and exteriors well-lit, and pursue quiet activities.
Ensuring Safety with At-Home Care
Dementia affects each person in a unique way. You will need to continually assess your environment based on your loved one’s current symptoms, such as level of memory loss, comprehension, confusion, wandering, disorientation, and physical limitations such as balance, coordination and mobility. Changes in symptoms may require additional environmental alterations. Individuals with dementia may forget how to use an appliance, get lost on their own street, become more sensitive to high or low temperatures, and grow more disoriented. In addition, their cognitive and physical abilities will change over time as the disease progresses. For example, as dementia progresses, people can lose the ability to recognize themselves in a mirror and will become agitated, certain that an intruder is in their home.
Here are some tips for making environmental modifications:
- Consider how to maximize independence. Involve your loved one in decisions whenever possible, and make sure changes are compatible with them.
- If the familiar works, don’t change it.
- Start with simple solutions first.
- Tailor modifications to fit a person’s age, interests and culture. For instance, use an apron—rather than a bib—to protect an avid baker’s clothing during mealtime, or place a futon on the floor for someone who falls out of bed.
- Weigh the risk level against maintaining independence, and seek a balance. For example, a man with poor balance fell frequently when walking, but he had been an athlete and remembered how to handle falls to reduce injury. Because of this, his desire to walk and feel independent outweighed the safety need to keep him sitting down all day.
- Maintain a consistent, predictable routine for all daily activities.
Top Recommended Modifications for At-Home Safety
Install deadbolts above the doors to garages, basements, outdoor areas or rooms with hazardous materials. Remove locks on interior doors to prevent being locked in. Hide a house key outside in case the door closes and locks.
Install brighter lighting and nightlights for navigating at night. Because changes in light levels can be confusing or disorienting, you may want to install additional lights in dimmer areas of your home and outdoor lights to reduce the confusion about nighttime darkness.
Install new stove knob covers or remove knobs when the stove is not in use. Store vitamins and medications out of sight and out of reach. If you have a garbage disposal, disconnect it from the power supply.
If you own a gun, remove it from your home or store it in a locked cabinet.
Make sure there are plenty of seating areas so your loved one can dress and undress with ease. Rearrange closets and put everything within easy reach.
Strategies for Safe Bathing and Showering
Bathing can be a challenge for caregivers. Because of changes in visual perception and general confusion, people with dementia can think showering and bathing is frightening, uncomfortable or dangerous. Also, people with dementia often feel humiliated by the suggestion that they need help with bathing. When confronted with perceived dangers or humiliation, most people will try to protect themselves in some way, lashing out verbally or physically, which can result in safety hazards for both caregiver and care receiver.
Tips to Get Your Loved One with Dementia to Bathe or Shower
There’s no one right answer for how to approach showering and bathing. What works for one person may not work for your loved one. However, there are some basic tactics you can take to make showering more pleasant.
- Before suggesting a shower, prepare the bathroom. Get everything ready and make sure the bathroom is warm.
- Turn the water on and make sure it’s warm.
- Try small talk or talking about something pleasant beforehand.
- Think of a purpose for the shower, such as someone coming to visit.
- Use euphemisms rather than the word “shower.” You may find more success with “freshen up,” “brush your hair,” or other phrases.
- Make the person the expert and give them choices. “Do you think that will work?” “Which soap should we use?”
- Make it a joint activity. “Should we both get freshened up before dinner?”
- If the person is embarrassed, have a large bath towel ready so they can cover up. If the person becomes angry at something you do, apologize. “I am so sorry; I won’t make that mistake again.”
- Don’t rush the process! Leave plenty of time.
- Adjust your expectations. It can be very challenging to get your loved one to take a conventional bath or shower. Remember that it’s OK to give a sponge bath between showers and baths.
Tips for Handling Wandering
A person with dementia can become easily confused by their environment, which may lead to wandering. Sometimes, they wander for a specific reason—maybe they want to visit a friend from their old neighborhood—and become disoriented once they get outside. Other times, they wander aimlessly or go explore an area that they mistakenly think they recognize. Any person with dementia is at risk for wandering, which is dangerous for the individual and stressful for family members. To protect your loved one, you should understand what can trigger wandering behavior and take steps to prevent it from happening.
Identify triggers that lead up to your loved one wandering off. Look for patterns. Was it just accidental? If so, more vigilance is required now. For example, in strange or crowded places, do not leave the loved one alone.
If it occurs at a certain time of day, plan activities or distractions that begin just before the wandering behavior.
Nighttime wandering is more complex. Again, look for patterns: Are they going to the bathroom and that triggers a search? Or have circadian rhythms changed, and they’ve confused day and night? Whatever the trigger, for a successful intervention, begin just before the wandering begins. If you wait too long, it will be difficult to intervene.
Implement a safety system that makes it harder to wander
The first step in a safety system is to assess your loved one’s ability to make decisions. Can your loved one call 911 in an emergency, or make decisions about safety? If not, the loved one cannot be left alone unsupervised. You will also need a plan to manage supervision. Risk can also be reduced by installing deadbolts over all doors, setting up security alarms or using alarm mats on the side of the bed. Sometimes environmental modifications are effective, such as painting doors the same colors as the walls or using wallpaper that looks like a bookshelf rather than a door. Another strategy is to put away all cues that could trigger an urge to leave, such as keys, coats or shoes.
Start searching immediately
If your loved one does wander off, begin searching immediately. Generally, you should start by looking nearby, within a 1.5 miles radius. Wanderers typically walk in the direction of their dominant hand. Check any previous wandering areas, as well as near brush or tree lines. If you can’t find your loved one within 15 minutes, call 911. State that your loved one has dementia and has wandered off. Request filing a missing person’s report.
Join a wandering support program
For added peace of mind, caregivers may want to explore programs such as the Wandering Support program offered by the Alzheimer’s Association and MedicAlert Foundation. Membership in the program includes 24/7 emergency response and an ID bracelet or accessory that helps law enforcement, first responders or good Samaritans contact caregivers and coordinate the safe return of their loved one.
Reducing Fall Risks
Fall risk is very high with dementia. As dementia progresses, impairment in gait, balance, and perception also progresses, and some medications may also affect balance. These impairments, along with basic confusion, lead to a tendency for falling. A thorough assessment of your home and your loved one’s safety can be your biggest tool to prevent falls, because it alerts you to areas needing urgent correction. Within the home, check for:
Is it slippery, cluttered or an uneven surface? Are there area rugs?
Are there unstable tables or chairs?
- Electrical cords:
Are they on the floor or draped across desks and tables?
Do they reach and partially cover the floor?
- Are there any grab bars? Are they stable?
- Desired items:
Are they easily accessible? Are they within reach?
When assessing a person with dementia’s safety, consider:
- Improper wearing of shoes (such as on the wrong foot) and clothes
- Gait and balance problems
- Dizziness and orthostatic hypotension (a form of low blood pressure)
- Urinary problems (frequency, urgency, incontinence)
- Improper use of walker or cane
- Compromising medical conditions (Parkinson’s, degenerative joints, compromised breath control)
- Sleep disturbances
- Hostility, anger and mood changes
Tips for Safety while Eating
Every dementia stage is characterized by changes in eating habits and skills. Those in the early stages of dementia often lose interest in formerly enjoyed foods and tend to prefer the same meals day after day. They can eat unassisted and correctly use all utensils, but they cannot eat and talk.
Those in the middle stages of dementia show pronounced changes in eating skills. Use of utensils is often limited to a spoon, or the combination of hands and a spoon. Spills go unnoticed. Napkins, placemats or loud music can become a distraction from the task of eating. They might gorge themselves or eat too fast or too slowly. As dementia progresses, your loved one may eat non-edible items, because they don’t recognize what is or isn’t food. Food is sometimes hoarded or held in their cheek.
When the late stage sets in, someone with dementia is essentially unable to eat without total assistance. Both perceptual problems and motor problems prevent them from getting food to their mouth, and it might limit chewing and swallowing. For both the moderate and late stages, the caregiver must provide basic prompts, including gestures, demonstrations and hand-over-hand assistance.
Safety is always a major consideration for any person in the middle to late stages. Here are some safety tips:
- Never leave a person with moderate to late-stage dementia unattended while they are eating.
- Cut food in bite-size pieces.
- Provide verbal prompts to keep them focused on eating.
- Provide gestures, demonstrations and hand-over-hand prompts to help them begin eating or to assist with the steps of eating.
- If possible, have them sit upright, tilted forward slightly to prevent choking.
- Check food temperature before serving it.
- Lock up or hide dangerous chemicals including liquid detergents and other household cleansers.
- If they hoard food, find a non-humiliating way to remove food from wherever they’re storing it.
Maintaining Cognitive Function
All people need to maintain cognitive function to keep their brain agile. When we are young, the tasks we perform as part of our career, school, and other social activities are often sufficient. But when we retire and especially when we have dementia, we need consistent practice to ensure Whole Brain Fitness. Whole Brain Fitness comprises three pillars: Mind, Body, Spirit. All three are required for successful aging.
- Maintain mental fitness: Brain games modified for different functional levels can be a fun and socially interactive way to maintain mental fitness. Those in the early stages of dementia can still play the card games they’ve always enjoyed, but reminders of rules and additional prompts may be helpful now. The Alzheimer’s Association has lists of books with brain games designed for people with dementia. Word games, word finding, finishing proverbs, or finding smaller words in a large word or phrase are usually good activities, even in moderate stages of dementia. Later stages will need primarily sensory materials used as word games. For instance, holding an orange, smelling an orange, and asking “What is this fruit?” When your loved one gets overwhelmed or starts to lose interest in an activity, seek out new ones to keep their interest and continue to build cognitive function.
- Meaningful activities: Regularly participating in meaningful activities can give your loved one a sense of purpose. These activities can include helping to care for a pet or baby, setting tables and helping clean, or helping with small chores like clipping coupons, sorting mail or folding laundry.
- Physical activity: This is the most important of all the pillars. Research suggests that 30 minutes of aerobic and strength training 5-7 days per week is ideal for building bone density, improving muscle strength, reducing anxiety and, most importantly, oxygenating blood to the brain. However, consult with your loved one’s doctor about the amount of physical activity they can do. In addition to aerobic exercise, introducing resistance weights and balance exercises can be helpful. Depending on your loved one’s level of physical ability, appropriate activities can vary. Walking, gardening, dancing, swimming and tai chi are appropriate for mobile people with good balance; seated exercises can be more appropriate for people with balance issues or who are wheelchair bound.
- Nutrition: There is considerable research on the importance of diet as an element in brain health. The MIND diet, developed at Rush University through a grant from the National Institute of Aging, has emerged with promising results that appear to delay symptoms and improve functioning in a substantial percent of people with dementia. The MIND diet is similar to DASH and Mediterranean diets, which were developed to prevent heart disease. The diet specifically selects foods that appear to improve brain health—such as leafy greens, nuts and berries, and whole grains with reductions in red meat and saturated fats. The MIND diet may also have protective effects against Parkinson’s disease.
- Reduce stress: Chronic stress causes our bodies to release hormones that eventually affect memory. Notice triggers that lead your loved one to feel agitated or anxious and work to remove them. You can also minimize stressful situations—figuring out which door leads to the bathroom, finding an item in the fridge—by adding signs or labels in your home to help your loved one recognize what they’re looking at.
- Strong social network: When cognitive changes start, withdrawal and isolation are common, which can lead to accelerated decline in physical and mental capacity. In addition, friends or family members may find it difficult to interact with your loved one and will avoid contact, which only worsens the effects of isolation. Whether your loved one is in the early or late stage of dementia, a social network provides support and an outlet needed to maintain function, build confidence and have happy, fulfilling days. The caregiver will need to find or create an optimal social environment that is adapted for changes in cognitive functioning. Adult day cares can be great options, as well as support groups sponsored by the Alzheimer’s Association, which can serve as social groups for caregiver and care receiver alike.
- Sense of purpose: We all need a reason to get up in the morning. Feeling that your life has meaning and that you’re in control fosters positive attitudes and emotions. Helping your loved one engage in an activity that restores a sense of control and purpose will require being mindful of previous interests and figuring out a way to adapt those interests and social needs to their functional level.
- Meditation and mindfulness: Meditation and other mind-body exercises like yoga can be adapted to functional levels. Depending on your loved one’s mental state, these mindfulness activities can include such activities as focusing on peaceful music, saying prayers, or listening to poetry.
Adapting Your Approach as Dementia Progresses
Dementia is not a static state. Your loved one’s abilities and preferences may change on a daily or weekly basis, and they will certainly change as dementia progresses. Consequently, you’ll need to modify the way you care for your loved one over time. Providing more help with bathing or adjusting your strategy for bathing, making dining modifications, or seeking out new activities better suited to their function level will all be necessary at some—or multiple—points. Refer back to the Cardinal Principles often as a guide when you refine your caregiving approach. In addition, be sure to check in with your loved one’s physician periodically; they may recommend certain modifications. At some point, you may also find it helpful to adjust your care strategy to include at-home care or a memory care community. Keep open lines of communication between all members of your loved one’s care team, so you can make adjustments that best meet their medical and mental needs as well as your own.