It can be challenging to fully understand your loved one’s Alzheimer’s disease diagnosis. How will their life change? And as their caregiver, how will your life change?
You and your loved one may struggle to process the news of their diagnosis at first and what it all means.
As their caregiver, you’ll need to consider how they may need help with their daily activities, how you can make their living area safe, what eating and nutritional challenges they may face and how their mood and behavior may change over time.
And let’s not forget that as a caregiver, it’s also important that you take care of yourself.
To help you sort through all the changes, challenges and information, clinical health psychologist and caregiver expert Lucille Carriere, PhD, shares Alzheimer’s caregiver tips.
Understanding your loved one’s Alzheimer’s disease diagnosis
Alzheimer’s disease is a brain condition — and the most common cause of dementia. The symptoms of Alzheimer’s disease get worse over time. Your loved one may experience a decline or change in:
Alzheimer’s disease affects approximately 24 million people across the world. It typically affects people older than 65. In fact, nearly a third of people older than 85 have Alzheimer’s disease.
There are different stages of Alzheimer’s disease. Some organizations explain the stages as mild, moderate and severe, while other organizations refer to the different stages as early, middle and late.
However your loved one’s healthcare provider defines Alzheimer’s disease, it’s important to know that it’s a unique journey for each person. The rate of progression varies for each person, as well as the symptoms they may experience during each stage of Alzheimer’s disease.
“Ultimately, the progression of the disease will cause your loved one to slowly lose the ability to care for themselves and require the help of others, such as family and/or professional caregivers,” says Dr. Carriere.
How to support someone with Alzheimer’s disease
Being a caregiver for someone with Alzheimer’s disease can be overwhelming. To help you navigate it all, Dr. Carriere offers her tips and advice on how you can support your loved one.
Assist with daily living activities
People with Alzheimer’s disease will eventually need help with activities of daily living. Depending on their level of independence, your loved one may need help with personal care activities, including eating, bathing, shaving and using the toilet.
To assist with these activities, caregivers need support, knowledge, skills, and patience. Dr. Carriere suggests the following tips:
- Establish a daily routine. Schedule grooming activities for the same time and same place each day. For example, brush teeth after meals or schedule baths for the mornings or evenings. Choose the most relaxed time of the day for bathing and grooming.
- Respect their privacy. Close doors and blinds. Make sure you cover your loved one with a towel or bathrobe to help them feel more comfortable.
- Encourage their independence as much as possible. This will help to promote a sense of accomplishment.
- Keep in mind their abilities. Allow enough time to complete each task — for example, brushing their hair or teeth.
- Give encouragement and support as they complete tasks. Acknowledge your loved one’s efforts when completed. For example, you can say, “You did a nice job brushing your hair today.”
- Tell the person what you’re doing. Make sure you keep an open line of communication with each activity. For example, you might say, “I’m going to wash your hair now.”
- Be attentive to personal hygiene. Keep fingernails and toenails clean and trimmed regularly and attend to oral hygiene needs. Dentists who specialize in working with older adults and dementia may be helpful.
- Break down all grooming tasks into simple, step-by-step instructions. Changes in memory and language abilities make it harder for your loved one to follow multiple verbal instructions. Instructions may be enhanced with a “watch me” approach in which you demonstrate the behavior on yourself first before asking them to do it. Grooming tasks may cause overstimulation and lead to unnecessary stress for both you and your loved one. Thoughtful planning and budgeting for extra time and patience may help lessen frustrations and increase your loved one’s openness to participate in these tasks.
“Due to the progressive nature of Alzheimer’s disease, you’ll want to continually assess if your approach is working with your loved one, and if not, try to adapt to meet your loved one’s ability level,” advises Dr. Carriere.
Create a safer living area
Alzheimer’s disease can affect your loved one’s memory, cause confusion, impair sound decision-making, cause balance problems and lead to some behavior and personality changes. This means that your loved one’s living space can be a potentially dangerous place.
It’s important that you reassess your loved one often and take any additional precautions as you see changes in your loved one’s abilities and behavior. Dr. Carriere says the following can help create a safer living area:
- Place a list of emergency numbers near all phones. This includes police, fire, poison control, doctors, family contacts and a neighbor’s phone number. Also, post this list on the refrigerator door.
- Install handrails on all stairways. Add brightly colored tape or safety grip strips to the edges of steps so they can be more easily seen.
- Install smoke alarms and carbon monoxide detectors. Smoke detectors should be placed near the kitchen and in all bedrooms. Check to make sure devices are working properly. Make sure you change the batteries at least twice a year.
- Have a fire extinguisher available. Make sure it’s in good working order.
- Consider purchasing an emergency medical alert or personal alarm system. Professional systems link directly to a representative 24 hours a day, seven days a week. If your loved one has an immediate medical problem, they can simply push a button on a special device worn around their wrist or neck, and a signal for help is immediately sent.
- Keep certain tools and supplies in a secure place. This includes tools/power tools, chemicals, cleaning and laundry supplies, matches/lighters and sharp objects like knives and scissors. You also want to remove any weapons from their home.
- Remove locks from doors of interior rooms. You want to do this so your loved one doesn’t get trapped inside.
“Assessing your home for added safety features and modifications can help prevent your loved one from experiencing unnecessary injuries, accidents and wandering behaviors, and may help reduce your worry,” says Dr. Carriere. “Remember to reassess the need for extra safety features as your loved one enters a new stage of Alzheimer’s disease and requires increased supervision.”
Work through eating and nutritional challenges
Your loved one may not need a special diet unless other medical conditions like diabetes, high blood pressure or high cholesterol, need to be managed. But the normal aging process itself can change your loved one’s eating habits.
For example, their sense of taste and smell may change as they age, which can affect what they choose to eat and impact overall health. There can also be problems with teeth or gums or dentures that make eating more uncomfortable. Diseases affecting vision are also common in older adults. This can make preparing, recognizing and enjoying foods more difficult.
In addition to these typical age-related changes, the changes in your loved one’s ability to function as Alzheimer’s disease progresses make maintaining health even more difficult. Dr. Carriere offers the following tips:
- Plan a healthy diet. Be sure to provide your loved one with a nutritious diet and plenty of healthy fluids, such as water or juice.
- Encourage independent eating if your loved one is able. Consider serving finger foods that are easier for them to handle and eat.
- Use adaptive equipment. If your loved one has difficulty holding or using utensils, consider using plate guards or silverware with specially designed handles.
- Don’t force feed. Try to encourage your loved one to eat and try to find out why they don’t want to eat. Remember to treat them as an adult, not as a child.
“A healthy diet can help promote or maintain a healthy weight, physical strength and energy level, all of which are important when living with Alzheimer’s disease,” says Dr. Carriere.
Manage unpredictable behavior
The changes in the brain that are associated with Alzheimer’s disease can sometimes lead to unusual thinking, unpredictable behavior and uncharacteristic personality features (such as cold or insensitive behaviors toward family members and social withdrawal). For example, your loved one may become anxious around family members, neighbors or friends whom they may not recognize or in situations that vary from their normal routine.
They may also become suspicious and suffer from delusions (false ideas that a person firmly believes and strongly maintains despite contradictory evidence). They may also begin to withdraw from social interaction, wander, and become aggressive and/or angry and irritable. Here’s how you can navigate their unpredictable behavior:
- Be calming. If your loved one becomes agitated or aggressive, try playing music, looking at old pictures together, reading a book, going for a walk or engaging in another enjoyable activity. Talk about “old times” — stories about the family or activities they once enjoyed (sports, hobbies and so on). Your loved one is more likely to remember events from years ago more than recent times. Talking about old times can be comforting and calming.
- Be reassuring. Reassure your loved one every day, even if they don’t respond. Use a soft, even-toned voice and be protective and affectionate. If they have delusions, be reassuring and curious rather than defensive.
- Redirect — don’t correct. Don’t correct or confront your loved one if they’re upset. Don’t argue or try to convince the person they’re incorrect. This will further agitate, irritate or upset them. A better approach is simply to agree with the comment, change topics or choose a new activity.
- Identify triggers. Try to identify any actions, words or situations that may “trigger” inappropriate or dangerous behavior. Document any episodes of such behavior so you can try to avoid the triggers in the future.
- Gain attention. Turn off loud radios and televisions and clear the area of other distractions before talking with your loved one. This will help improve attention. Position yourself at the level of your loved one and maintain eye contact. If your loved one is confused, state your name and relationship, like: “Hi Dad, it’s Jennifer, your daughter.”
- Reword statements. It may help to simplify or reword your statements if your loved one doesn’t seem to understand. Try to be patient and supportive, especially if your loved one is confused and/or anxious. Speak using as few words and short sentences as possible. Use simple words.
- Keep it simple. Follow simple routines and avoid situations that require your loved one to make decisions. Having to make choices can be very frustrating and cause anxiety for them. Avoid open-ended questions.
- Be patient. It may take some time for your loved one to figure out what they want to say. If they’re struggling to find the right word(s), offer some suggestions.
- Adapt to your loved one’s communication methods. Try to understand the words, gestures and body language your loved one uses to communicate. Adapt to their way of communicating; don’t force your loved one to try to understand your way of communicating. Keep in mind that negative behaviors — like agitation, irritation, aggression or pulling at clothing — may indicate they have a need but simply can’t express what it is. Perhaps they can’t find something they’re looking for, they’re hungry, thirsty or tired, they may be in pain or they have to go to the bathroom.
- Change your approach. You may have to change an approach or solution to manage a behavior that previously worked. This is because the brain of a person with Alzheimer’s disease changes as the disease progresses. In deciding if the behavior is dangerous and warrants attention (or simply frustrating), you may want to ask yourself, “Is this behavior an issue for me or my loved one?”
- Review medications and watch for side effects. Check with your loved one’s doctor when you see changes in their behavior. Is your loved one taking their medications as directed on the label (the correct amount, correct number of times per day, correct time of day)? Has there been a change in medication or the dose of medication? Side effects of some drugs can include depression, agitation, drowsiness or memory issues. Is your loved one taking any over-the-counter medicines, herbs or supplements? These products can produce their own side effects or interfere with the prescription drugs they may be taking. In some cases, the behavioral problems themselves — especially physical aggressiveness and delusions — may require treatment with medications like anti-anxiety or anti-psychotic drugs.
Mood, behavior and personality changes may be due to brain changes from Alzheimer’s disease, medications, other medical conditions and/or environmental triggers. Regardless of the source, these symptoms are often rated as the most stressful for caregivers to manage. The unpredictability of the symptoms may complicate or disrupt necessary care tasks provided by caregivers, such as feeding, bathing or toileting.
“Untreated mood and behavioral symptoms may also prematurely worsen cognitive abilities (such as memory and language) and reduce quality of life for both you and your loved one,” explains Dr. Carriere.
Taking care of yourself
Most people who provide care and support to a person with Alzheimer’s disease don’t think of themselves as caregivers. Rather, they consider themselves to be a devoted spouse, child, family member or friend helping a loved one in a time of need.
If you pause for a moment and think about all you do, you may be surprised by the depth and extent of your involvement. As a caregiver — and similar to the well-known pre-flight instruction — “you must put on your oxygen mask first before assisting others.” You must take care of yourself first in order to be an effective caregiver. So, what should you do? Dr. Carriere offers some self-care tips for managing some of the most common challenges caregivers face:
- Be honest with yourself. Recognize when your loved one’s behavior is more than you can handle. Safety — your own and your loved one’s — must be considered at all times.
- Know your limits. Management of problematic behaviors associated with Alzheimer’s disease can be stressful. As a caregiver, it’s important to know your physical and emotional limits during these stressful episodes and when to reach out to others.
- Professional help is available. There are programs designed specifically for caregivers to learn hands-on skills in managing difficult behaviors while also learning self-care. Caregivers may also benefit from meeting with a counselor to help deal with the daily stressors of caring for a loved one with Alzheimer’s disease.
- Join a support group. Lots of other families are caring for a loved one with Alzheimer’s disease and can share successful tips for managing behavior problems.
“Caregivers play an instrumental role in promoting the health and wellness of their loved ones with Alzheimer’s disease,” recognizes Dr. Carriere.
“Beyond providing loving care and assistance to their loved ones, caregivers serve as vital members of the healthcare team. We must recognize their role and ensure they are supported and equipped with skills throughout the caregiving journey.”