Many people with Alzheimer’s or other forms of dementia can live at home for many years, especially in a household with support from family or private caregivers who can ensure their safety and take care of things like cooking and general household chores. Yet the behaviors that emerge when someone has dementia can frighten or offend people who have never been around someone with dementia or who are not adequately prepared beforehand.
In the early stages of dementia, behavior is usually not frightening. But because the patient is still involved in regular activities outside the home, it can be challenging to work around limitations. Family members and caregivers should be alerted to a dementia diagnosis as early as possible so they can establish routines that will be helpful as the disease progresses. Watch for symptoms such as the following:
A dementia patient will tell the same stories over and over, or ask the same question repeatedly. This is often the first indication that something is not right
HOW TO COPE: Have patience! Dementia removes the brain’s ability to make new memories, so reminding the person that they just asked that question won’t help them remember and will only make them feel helpless, angry, or frightened.
People with dementia may miss appointments, or may not be ready on time.
HOW TO COPE: Use sticky notes, a shared calendar with reminders on a smartphone (if the dementia patient is used to using one), or a large paper calendar prominently displayed to allow the person to maintain control of their life by reminding them where they’re supposed to be. Assign someone the task of keeping the calendar up to date, and inform family members that they should notify that person of commitments.
Often, symptoms of dementia get worse in the late afternoon or early evening, particularly in the early stages.
HOW TO COPE: Set a regular schedule and stick to it. This will minimize confusion. Also, make sure the dementia patient gets exercise every day, preferably out of doors, and discourage naps. This will ensure that they are tired and can go to sleep easily in the evening.
Dementia frequently impairs judgment. This is a tricky problem, as often the family member is the patriarch or matriarch who’s accustomed to being in charge, while care staff are accustomed to doing what they are told.
HOW TO COPE: Alert staff to the situation. Encourage them to reach out to you, to another family member, if they get a request to do something that seems odd or off-base. It’s OK to tell the dementia patient “I’ll get right on it” - and then review the request with the family before doing anything. And be aware that often the first signs of compromised judgment manifest in financial decisions, so encourage everyone to double-check before doing anything significant with money.
Assigning a patient to a “stage” of dementia is not cut-and-dried. In general, however, as dementia progresses towards mid-stage, behavior becomes less rational. It is often easiest to keep the patient in familiar surroundings at home as much as possible. This avoids embarrassment for the patient and the family, and minimizes situational triggers, but puts more burden on caregivers. It’s also good practice to designate someone usually a family member to be the main contact point and patient advocate.
It can be disconcerting when a dementia patient no longer recognizes family members or caregivers. It may be difficult or embarrassing when the dementia patient thinks a housekeeper or caregiver is his daughter, but it can be worse if the he believes she is a home intruder and accuses her of trying to steal jewelry.
HOW TO COPE: Encourage everyone to gently say their name, to see if the reminder triggers a memory and recognition. If not, mention a family member (“Your wife asked me to take you down to dinner”) or simply explain what you’re doing (“I’m here to help with the house cleaning”). Remind everyone that the dementia patient is still intelligent and aware, and is likely trying to put things together in a way that makes sense to him, and they should focus on giving him cues that allow him to do so.
Not all dementia patients wander. For someone who does, though, it can be extremely dangerous.
HOW TO COPE: First, make sure to remove as many dangers inside the house as possible. Area rugs or electric cords can be a tripping hazard. Cleaning products and other chemicals, and sharp implements like kitchen knives or scissors, should be kept out of sight, ideally in locked cabinets, as should any medication. Second, make it a habit to close and lock all outside doors, and be sure to alert any security staff to the problem. Third, establish visual cues to enable the person to navigate the home, such as a nightlight in the bathroom. If wandering persists, and the dementia patient is not able to be contained in a safe space (like a wing of the house that can be closed off), you may need to provide for 24-hour supervision. A care agency can help with nighttime “sitters” if necessary.
While technically these are two different things, in both cases the dementia patient’s behavior can seem crazy or even frightening. They may have conversations with people who are not there, or become convinced that government agents are “coming to get them” or that their body is covered with bugs.
HOW TO COPE: Especially if the diagnoses is Lewy body dementia, in which delusions are common, be alert to when they occur. It’s OK to play along with the hallucination, but in a way that distracts or redirects them. If they say FBI agents have put microphones in the lamp, suggest a walk in the garden. If they insist that noisy children are playing under the table, open the door and usher the “children” outside - and then redirect them to a calming activity like watching television or having a snack. Another good approach is to acknowledge the feeling rather than the words (“I can tell you’re upset - let me help you”).
Physical aggression, like hitting or pushing, or verbal aggression, like cursing, shouting, or throwing a temper tantrum, is usually triggered by emotional discontent or physical discomfort.
HOW TO COPE: It’s best to do everything possible to avoid triggers, such as establishing familiar routines with consistent bedtimes and mealtimes, and allowing plenty of time for any activity so the patient is not rushed or stressed. Focus on hygiene, as declining sanitary habits can easily cause urinary tract infections, which in turn cause discomfort and frustration and consequently trigger aggressive behavior. If the patient does get triggered, stay as calm as possible and do everything you can to redirect her, such as moving to a different location, starting a new activity, or - if appropriate - providing a calming physical gesture like a hug or stroking the hand, arm, or back. Attempting to reason with a dementia patient is rarely helpful - the disease robs them of the ability to rationally process information, so arguing only makes things more stressful for both parties. Once the person is calm and safe, log the behavior to highlight any patterns in the triggers (time of day, medication doses, fatigue, etc.).
As the brain loses its ability to judge, patients sometimes behave inappropriately or impulsively. Of particular concern is a lack of sexual continence. Patients may take off their clothes, touch or grope others including private caregivers inappropriately, or use sexually inappropriate language, with no sense at all that this is not OK.
HOW TO COPE: If this type of behavior becomes frequent, make sure you hire a trained professional such as a Nurse’s Aide, rather than putting family members at risk for uncomfortable confrontations.
In the end stages of dementia, people experience the world mostly through sensations such as smell and touch. Intensive, round-the-clock care is usually required as the patient loses the ability to eat and to control bodily functions. The family will likely need professional caregivers, or they may decide to move the person to a care facility. In this case, you may wish to hire a professional geriatric care manager who understands the local options for dementia patients.
People in late stages of dementia can no longer control their bodies, so they are often unable to handle things like bathing, brushing teeth, or going to the toilet. Yet they are still aware of themselves as individuals worthy of dignity.
HOW TO COPE: Poor hygiene, especially related to the toilet, can cause all sorts of problems, so a private caregiver or family member will need to assist every time. Keep a log of when the person eats and drinks, and when they use the toilet afterwards, to identify their natural schedule so that you can prompt them to get to the bathroom on time. Reduce fluids in the evening. Adult diapers can help, but they need to be changed regularly and careful cleaning is required. It may be easier for everyone if you bring in professional caregivers with specific training, and no personal history with the individual that would make these tasks uncomfortable for both parties.
A patient with late-stage dementia may lose interest in food, or even forget to eat altogether. As activity declines the person needs fewer calories, but adequate nutrition is still important.
HOW TO COPE: Keep track of what the patient eats and drinks through the day. Experiment with small snacks more frequently, rather than larger meals. Focus on soft foods if the patient has trouble swallowing, or finger foods if he’s challenged to hold a spoon. Find tastes they enjoy, worrying less about added sugar and calories and more about having them eat anything. If ice cream is all he wants for dinner, that’s fine at this point.
Research has shown that despite significant memory loss, the core self is still present in late-stage Alzheimer’s patients. Playing old songs the person enjoyed, cooking favorite foods, or looking through old photo albums can spark recognition and connection even for late-stage patients.
Don’t hesitate to turn to professional resources to help support you and family members through this difficult time. A knowledgeable geriatric care manager can provide advice on resources, while local care agencies such as Home Care Assistance have trained personnel that can help take the burden off the family.