People living with Alzheimer’s disease are likely going to require a great deal of care.
How much they rely on others to perform daily tasks for them will depend on the severity of symptoms, on when the disease is diagnosed, on age and more.
Caring for a loved one with Alzheimer’s can be difficult for a number of reasons.
An initial diagnosis for both the patient and their loved ones is likely both shocking and painful. Sometimes, preparing for the disease, especially if nonhereditary, is impossible.
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The pace at which a patient declines is often unknown, and each new day can bring on new, dejecting experiences.
If your loved one is suffering from Alzheimer's, you may be met with tender decision-making, including whether to care for the family member yourself, work with other family or friends to schedule care or outsource care in or out of the patient's home. It is important to choose the best fit for the patient and the family.
Below are tips for loved ones caring for a patient with Alzheimer’s disease.
The first step to caring for someone with Alzheimer’s disease is to understand the three stages of the illness.
Often, it is difficult to distinguish what stage of Alzheimer's a person is experiencing as there is no set timeline for how long stages last or how severe symptoms are. The symptoms in each patient will reveal themselves differently.
That said, the three stages of the disease are early (mild), middle (moderate) and late (severe).
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During the early stages of the disease, an individual will be able to do daily tasks on his or her own and be part of social activities. The person may experience slight memory loss, such as having a hard time recalling someone's name or not being able to think of a certain word.
During the middle stage, the symptoms are going to be more pronounced and a greater level of care is going to be needed. During this stage, mood changes are likely to occur, and a person may start to forget memories from the past or information about themselves. Individuals with mild Alzheimer’s may wander or get lost.
During the severe stage of Alzheimer’s, a patient is going to need around-the-clock care. This is because all the symptoms with regard to memory will worsen, and a person may lose social awareness.
The individual may also have a hard time communicating simple words, thoughts, wants or needs with others.
Understanding the stages of Alzheimer’s will assist in understanding the level of care your loved one needs.
There are a few care options available for those living with Alzheimer’s. When symptoms first begin, you may be the primary caregiver, but as time progresses and symptoms worsen, you may need help.
Caring for Alzheimer's patients can include in-home care, which allows the patient to continue living at home. A medical professional would assist in daily tasks and medical treatment.
Adult day centers are available for patients to enjoy brain-stimulating activities, games, music and socializing with others. These centers also offer the opportunity for caregivers to go to work or run errands throughout the day while also knowing their loved one is receiving good care.
When symptoms become severe and around-the-clock support is needed, long-term care is a heartbreaking but often necessary option for many. Those people who require more care than can be provided at home should be considered for long-term care facilities such as retirement housing, assisted living and nursing homes.
When caring for someone with Alzheimer’s disease, structured routines are important. Sticking to a set regimen helps the patient understand what to expect each day and allows patients to complete certain tasks on their own.
This can also boost self-esteem and help them feel accomplished.
You may find it helpful to sit down with them each day and create a to-do list. This way, they know exactly what to expect during the day. The to-do list for every day can include teeth brushing, having a bath, getting dressed and eating each day at specific times.
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Then, when they're comfortable, incorporate other items like reading the paper, watching a talk show, listening to a podcast or music, etc.
Planning activities for each day will allow for other loved ones to be part of the fun and engage with the patient. The Alzheimer's patient will have an activity to enjoy being around family and friends.
Activities highlighted by the Alzheimer’s Association include taking a walk, planting, feeding birds, playing catch, having a picnic, looking through photo albums, listening to music, playing checkers, doing a puzzle, reading a favorite book and playing a card game.
If patients were previously a musician or artist of sorts, offer them paint and a canvas or remind them there is a piano or guitar around. Support them to play or paint if they'd like to and enjoy the time with them.
While loved ones with Alzheimer’s disease will need care, love and support, they will also need to complete tasks on their own to stimulate their muscles and mind. An example of supporting from afar would be laying out an outfit for them but having them dress themselves. Purchase loose-fitted clothing with velcros and zippers rather than buttons so they can more easily get dressed.
Place a stack of plates, bowls, cups and silverware on the counter and offer up the idea they set the table. Be pleased and grateful toward them during and after setting the table and assist when necessary. Encourage questions and reassure them you are there to help if needed.
If patients become frustrated with themselves during a task that they are hopeful to complete themselves, recommend a break and return to the task a while later.
People who have Alzheimer’s may experience a loss of appetite, so it is important for caregivers to make sure that they are provided enough food, water and nutrients in their meals.
Often, patients will become angry when it's time to eat or refuse a meal altogether. If this is regularly occurring, it may be time to consult a doctor about other care options to ensure patients are as healthy as possible.
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Patients who live alone with more mild symptoms may also have forgotten whether they ate earlier or not. It's important to provide meals that can also be monitored when gone.
Instead of one large container of food, separate meals into smaller containers. If an empty container appears in the sink or dishwasher, it's likely the patient ate and doesn't remember. You can also label containers with "breakfast," "lunch," "dinner" or "snack" to help people easily navigate the meals.
There is also the concern of the inability to easily chew or swallow anymore. Difficulty swallowing can put an Alzheimer's patient at serious risk of choking. Soft foods like yogurt, bananas, mashed potatoes of any kind and applesauce are safe and nutritious options to offer the patient.
Patients with Alzheimer's should feel comfortable and safe in their own home, but they should also truly be safe. To keep a patient safe, you can do a few things.
Display emergency numbers and phone or computer passwords in a visible place like on the fridge or next to the bed, make sure windows and doors around the house lock securely, and cover outlets. You should also secure handrails on stairways, keep medications locked, and keep their space clean and without clutter to avoid falling or confusion.
A clear path from the bedroom and bathroom through the hallway and into the living area is very important for Alzheimer's or dementia patients.
It would also be helpful to remove rugs that slip or are partially rolled up and can be tripped on.
You should also make sure smoke alarms and carbon monoxide detectors are working and unplug gas appliances if symptoms are more severe.
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Have discussions with the Alzheimer's patient about what around the house may be dangerous, where necessities are placed and remind the person of important things to do, such as turn the water off after use.
Communicate with loved ones with Alzheimer’s as often as you can. Their ability to communicate or emphasis on the want to communicate is going to vary depending on the stage of the disease they are in. In general, speak in a slow and calming tone. Ask one question at a time and try conversing in a space without distractions.
If you are providing instructions, repeat them slowly until the patient understands or proves unable to complete the task without help. Avoid "babying" the patient; don't speak in a demeaning way or with a "baby voice" or snobbish tone. Include the person in conversation and steer clear of talking about the individual as if he or she isn't present.
While it will be challenging to avoid, especially if the loved one is a family member, keep away from asking them about their past. Alzheimer's patients may truly struggle to remember, and trying to recall specific details may frustrate them or sadden them at the realization that they've forgotten. Bringing up the past can also spark traumatic or difficult memories for them. Stick to current topics and what's happening presently of which they can be fully aware.
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Try nonverbal communication when speaking to or with a patient and make good eye contact with the individual. Nonverbal communication includes touch like hugs or kisses, facial expressions like smiles, and gestures like pointing or waving.
Caring for a loved one with Alzheimer's disease or dementia isn't a job, it isn't a chore, it isn't burdensome — but it certainly isn't easy. It's important to give yourself grace when you are the primary caregiver or one of the caregivers of a patient with Alzheimer's.
Often, caregivers are children or grandchildren of those suffering from the disease. It can be hard to want and need to care for them while also experiencing the pain of losing them. Watching a mother, father, grandparent or other family member lose core abilities and memories altogether is distressing.
Seeing the patient but reintroducing yourself to the loved one daily is extremely challenging and can take a toll on a caregiver.
The life expectancy of a patient with Alzheimer's disease isn't clear, but on average, patients over 65 die within four to eight years of diagnosis, though they can live up to 20 years after symptoms begin, according to the Cleveland Clinic. Some days or years will be more challenging than others — and that's anticipated.
It is important to be patient with yourself, other caregivers and the loved one during this time, no matter how long it may last.
