People who are experiencing dementia/Alzheimer’s will progress through an identifiable set of stages, regardless of the type of dementia they are experiencing. The following is what dementia looks like when it is viewed from a functional perspective rather than a medical one.
Stage 1: Independence
At first, people who have dementia want as little interference from their family and friends as possible. They are still able to read a clock, perceive the passage of time fairly accurately, and look at a calendar to determine what day it is so that they can attend appointments and activities. They wake up in the morning and know that the events of the dream they may recall were dreamed events. They can navigate the kitchen and take care of their homes more or less as well as was their practice earlier in life.
Those who do not have anosognosia (the condition of being unable to perceive our own impairments) prefer to do things for themselves but will be grateful and appreciative. When they do accept help from a caregiver, the common refrain is: “Thanks so much for the ride to the grocery store. But really, I’m managing just fine.” Those with anosognosia will be less grateful for assistance. They may respond to offers of help with indignation, seeing them as subtle inferences that they are needy or incapable. They believe that any mistakes or confusion are caused by other people and so may become paranoid or suspicious. However, in the earlier years of dementia, whether people have anosognosia or not, they will attempt to mask the true extent of their confusion and memory loss so that they can preserve their independence for as long as possible.
Stage 2: Uncertainty
At some point, uncertainty will set in. The person with complete anosognosia will stubbornly persist in believing that their confusion and frustration are due only to other people’s mistakes, but even those with partial anosognosia will begin to doubt themselves. Now that they have so often found themselves unable to complete a simple task, or at a loss about what they were doing or should be doing, they know they need someone else dropping in regularly.
At this stage, when we are dropping a client at home, rather than thanking us and telling us they are fine, they will ask, “Will I see you tomorrow?” or “Would you like to come in?” This indicates to us that our client is ready for more assistance, so we increase our contacts from a few times a week to one activity a day.
Stage 3: Follow the Leader
We know our clients have moved into this next stage when they start saying to us, “Oh, I’ll just have whatever you’re having” or “It doesn’t matter to me—you decide.” Now they are no longer able to make decisions without assistance. They cannot track time, read clocks, or interpret calendars consistently. Their desire for independence has melted away unless anosognosia is still fully present.
At this point, we give our clients more support. We watch to see whether they are losing weight due to failure to recognize food and packaging, whether they are bathing or have forgotten the purpose of soap, whether they still retain some idea of cleanliness in the home, and whether they have begun to perceive dreamed events as real. Now we expect their judgment to be consistently impaired, and watch for misinterpreted realities that could become dangerous. Their daily activities with us are gradually lengthened to include meals, cleaning, and household chores—and maybe visits to our local wellness center for a supervised shower and soak in the hot tub.
Stage 4: Clinginess
Our clients slip into this stage—becoming clingy—when they are experiencing confusion on such a level that they are commonly unable to do simple tasks when alone, or cannot understand whether it’s morning or afternoon, Tuesday or Saturday, October or May. They might say, “I’d feel better if I could hold your arm.” They may not be able to verbalize this need and just reach out and take their caregiver’s arm. In a crowd, even in a small group, these clients sidle closer or lean into their caregivers. They look for eye contact and want to make eye contact often. For them, at this point most people have become strangers—even family members and dear friends—although they will still do their best to mask it. Memories can be recalled and faces placed, but it requires careful leading through a series of related memories to get there.
We typically see these clients twice daily, seven days a week, unless there are friends or family members who are making visits on a schedule too. Routine and familiarity are now essential. The smallest change can bring on a crisis of fear and confusion. When our clients are in this stage, we are vigilantly watching for the moment they move to the next level of need, which will be a transition we dare not ignore. The change may be sudden or gradual, the result of a crisis or merely a response to an accumulation of daily failures or irritations.
Stage 5: Overnight Care
Eventually, those of our clients who have been living alone and do not have anosognosia will begin turning to caregivers, friends, and family members and say, “Would you like to move in with me or stay over?” Wanting to have someone with them overnight does not imply that they need full-time care. People at this level still enjoy the autonomy of being able to spend a few hours alone, but not much longer than that. Our response at this point is to immediately provide a caregiver who is present from dinnertime through breakfast, full-time on weekends, and off-duty during business hours. We have found this works very well as a part-time job for students studying nursing or social work. During the day, we arrange midday activities that provide the client with sensory and social stimulation but allow them an hour or two each morning and afternoon to be spent alone.
Stage 6: Fulltime Care
Eventually our clients become so unable to choose their own activities or make sense of the world around them that they need to have someone present at all times in order to feel comfortable. Even people who have anosognosia will eventually welcome the full-time presence of other people. We know it is time for full-time care when we arrive in the home to find the client wandering from room to room, unable to relax: he or she has lost the ability to know what they want to do. These people will say, “I just don’t know what I’m supposed to be doing” when you arrive, and “Do you have to go?” when you get ready to leave. This will happen long before they become bedridden or unable to communicate. At this point, we make sure that someone on the caregiving team is always present. We are careful to continue the same schedule of daily activities that have been in place and, as much as possible, use the same caregivers as companions for each activity or shift. In an optimal situation, two or three caregivers are available to share morning and afternoon activities. Again, it is best to have one person on duty for all overnights—and off duty during the daytime—and we try to have the overnight caregiver be the person who prepares the evening meal. Having a bedtime routine that never varies is very important so that sleeping habits can be developed and maintained for as long as possible.
These are the stages of dementia I have watched my clients go through here at DAWN. They reflect changes in functioning, not medical diagnoses. When we watch for and respond to our loved ones’ and clients’ changing ability to function and their emotional needs, tailoring the level of care accordingly, they more readily accept care and are less likely to put themselves at risk. At DAWN, we believe that people who feel secure are less anxious. How someone feels dictates how they will function and act—whether they are experiencing dementia or not.