Caring for someone with Alzheimer’s dementia is a 24-7 job. Here, neuro specialists break down ways to keep your loved one's health on track, as well as your own.
Whether your loved one has faced a recent diagnosis or has been progressing for years, as a caretaker, you hold a delicate and challenging role to keep their health on track, while not neglecting your own.
You’re not alone in helping manage this intimidating (and currently incurable) disease, as Alzheimer’s impacts some six million adults in the U.S., notes neurologist Dr. Taimur Zaman.
Fortunately, there are ways to potentially slow the progression and give your loved one the best life possible. Below, Dr. Zaman and neurology specialist Dr. Andro Zangaladze share what to expect and tips for creating a supportive, safe routine.
Recruit a team.
The last thing you want to do is hinder how well you can take care of your loved one, says Dr. Zaman. Establishing boundaries and setting aside time for self-care requires a helping hand. Not everyone can afford at-home assistance, notes Dr. Zangaladze. It may be helpful to establish a plan/schedule with friends and family to determine who will take care of what tasks, when you need time for yourself.
Studies show that caretakers’ and Alzheimer’s patients’ mental health has suffered even more since the COVID-19 pandemic – with more social isolation and risk of illness than ever before. (Editor’s Note: Click here to learn more about the impact of the pandemic and what resources are available for help.)
Do your research & debunk misconceptions.
If you’ve never assisted someone with dementia before, don’t approach it blindly. Alzheimer’s is a complex neurological disease that affects everyone differently, says Dr. Zangaladze.
Symptoms can be grouped into three main categories of progression: early/mild, middle/moderate, and late/advanced. Different levels of care and supervision are needed at each stage; you should pay close attention to what your loved one experiences. It usually takes around six to 10 years for symptoms to become advanced, adds Dr. Zaman.
- Early/mild: some forgetfulness (not daily); tendency to misplace personal items; trouble recalling names or finding the “right words” to say; some confusion and memory loss; difficulty navigating when driving; trouble fulfilling work duties/usual tasks; still able to take care of themselves; and maintains basic activities of daily life.
- Middle/moderate: forgetfulness, confusion, and memory loss worsen; ability to read, write, and calculate might be affected; difficulty operating household appliances; new or worsened frustration, anxiety, and/or depression; loss of driving privileges; and requiring more assistance with daily activities and managing medical care.
- Late/advanced: symptoms above worsen more, and cognition is severely impaired; significant dependence on others for daily activities; assistance is required with basics, such as feeding, grooming, and getting dressed.
A common misconception is that people who cannot or do not respond can’t hear you, continues Dr. Zangaladze. This isn’t always the case. While there can be hearing difficulties, more often than not, this is a sign of impaired comprehension.
Mood and behavioral changes, such as aggression and defiance, are some of the most prominent symptoms for people at all stages, explains Dr. Zangaladze. “Reading about the disease and what other people go through will help you realize that when your loved one lashes out at you, it’s not personal nor intentional. It’s just part of the process that you have to take a step back and accept.”
For more information on Alzheimer’s, visit Alz.org.
Create a safe home environment.
Those with a moderate-advanced stage dementia are more prone to getting lost and falling. Home modifications can decrease the likelihood of injury and/or leaving the house unattended, says Dr. Zaman. The following may be beneficial:
- Alarms/home security systems, so they can’t walk out/get in the car
- Wearable life alert monitor for falling and calling 9-1-1
- Carpeted floors/throw rugs, to reduce the risk of slipping
- Incorporating all main living spaces – for bathing, sleeping, and eating – on one floor.
A home health aide and/or occupational therapist may be able to assist with showing them the best/safest ways to get around the house.
Maintain structured, daily activities.
Unfortunately, when people with Alzheimer’s don’t stay active and socialize, they can become depressed and lose interest in things they used to enjoy, says Dr. Zangaladze. This may accelerate the progression of their disease.
“Preserving cognitive function takes a lot of work, and they’ll need your help,” continued Dr. Zangaladze. “An engaging routine with physical exercise, cognitive exercise, and socialization is key. Those with mild-moderate symptoms can accompany you to the grocery store, fairs, or other social events.”
Maintain other aspects of health.
For decades, medications have been trialed for Alzheimer’s leading to mild improvement of symptoms, says Dr. Zaman. In June 2021, the FDA approved a new medication, called Aduhelm™, which addresses the underlying processes of Alzheimer’s and yields promising results. However, medication must be coupled with a healthy lifestyle. An active routine, balanced diet and weight control, blood pressure management, and a positive attitude can all contribute to better outcomes.
Encourage independence as much as possible.
Supervision is a must, but for some things, it doesn’t need to be as strict. Ensure they take all their necessary medications, says Dr. Zangaladze, but if they’re playing a game or folding laundry, allow them to fulfill the task themselves. Maintaining some independence and having responsibilities is incredibly important and will likely foster a more positive mindset.
What should you NOT do?
Don’t infantilize (talk to like a child) your loved one or talk over them, says Dr. Zangaladze. “We witness this a lot. Patients with mild-moderate symptoms often still want to share how they feel, even if they can’t say it in the most comprehensive way. Let them speak for themselves, and then clarify what they mean. Outside of the doctor’s office, too, involve them in conversations when appropriate.”
Drastic changes in routine can also be challenging for someone with Alzheimer’s to accept and adapt to; this should be avoided, if possible, notes Dr. Zaman.
When you need more support.
Remember, caring for someone with Alzheimer’s requires teamwork. Medical professionals are an integral part of that team. When you have questions, don’t hesitate to reach out.
Before speaking with your loved one’s neurologist, try to write down all the questions you have, so nothing important is forgotten, suggests Dr. Zangaladze. In many cases, medical intervention can lead to a significantly better outcome, adds Dr. Zaman. Additional referrals to specialty care for mental health or memory disorders may be beneficial.
“My biggest piece of advice is simply to be patient and understanding,” said Dr. Zangaladze. “Alzheimer’s is a frustrating disease for everyone, but it’s no one’s choice. They need your help to get through this.”