Caring for a loved one with Alzheimer’s disease is a tough job that can be heartbreaking, frustrating, frightening and exhausting. It’s not easy to see someone you love slip away before your eyes.
So how do you make this difficult journey easier to navigate?
According to Miami Jewish Health psychiatrist Marc E. Agronin, M.D., it’s important to learn as much as you can about this memory-robbing disease as soon as possible. Being informed will help you understand the challenges you will face caring for someone with Alzheimer’s disease.
Caregiving can be stressful. And if relatives don’t understand what’s wrong or how the disease progresses or what sort of limitations to expect, stress factors can multiply.
There’s a lot you can do to prepare.
Tips to Help Families Deal With an Alzheimer's Diagnosis
1. Find the Best Person to Conduct the Right Evaluation
A comprehensive evaluation should be conducted by a geriatric psychiatrist or neurologist. Don’t wait. According to Agronin, the longer someone waits to get an evaluation, the worse their condition may get, causing more stress to caregivers and leaving a shorter window of time for that person to make important decisions before it’s too late.
“I think people just don’t understand what they are dealing with,” Agronin said. “People are afraid but they need to know there’s help.
2. Understand what’s going on.
“What is the diagnosis? If family members don’t know the difference between dementia and Alzheimer’s, they don’t know what to expect,” Agronin noted. “People get nervous. Make sure the person gets a sufficient evaluation from the right specialist.”
Education is power. And you don’t want to miss an acute problem that requires immediate treatment. It can be enormously confusing and stressful to manage what is going on, so rely on experts for help.
3. Find Your Dream Team
Caring for someone with Alzheimer’s requires partnerships with people who can help. And if you’re caring for a loved one with Alzheimer’s, you’re going to need guidance. Otherwise, you’re flying blind.
“It’s really important to have that one specialist who will follow your loved one,” Agronin said. “Find and have on call the experts you need to comprise your care team.”
Your team might include a primary care doctor, a neurologist, geriatric psychiatrist, social worker and home health aides. Keep their names and numbers available, so you can reach out when the going gets tough.
4. Create a Care Plan
“What kind of care does your loved one need? For example, if you find out the person has moderate impairment, they shouldn’t be driving, and maybe they shouldn’t be left alone either,” Agronin said. “Create a plan that addresses both their limitations and their strengths.”
And while a loved one still has decision-making capacity, discuss “what-ifs” with them and address legal issues such as advanced directives, surrogate decision makers, and estate planning.
Agronin also suggests addressing any medical issues that may be worsening.
It’s also important to get the person involved in brain-stimulating activities that are physical, mental and social. Finding and engaging their interests and strengths will improve the quality of their life on many levels.
5. Realize that Caregiving Isn’t Easy
There is a growing nation of millions who are engaged in the noble, but extremely challenging role of caregiver and they too deserve support and care. Because Alzheimer’s starts with mild symptoms and progresses relentlessly to rob a loved one of their personality, combined with the exhausting task of providing care, the job can be burdensome, Agronin said.
“The most important factor is for caregivers to have time away from caregiving, which is called respite time,” Agronin said. “This time is meant to be meaningful, rejuvenating, and pleasurable in order to recharge emotionally and physically.”
Relatives and friends can provide a caregiver with much-needed relief.
“Caregivers need to have a break. They need to take care of themselves and have other people help them,” Agronin said. “They really need to marshal the family and friends so they are not alone.”