Someone you love and care about just received an Alzheimer’s disease diagnosis—now what? The next steps can be emotional and overwhelming, especially if you’re unfamiliar with what caring for someone with Alzheimer’s involves exactly.
There’s also no single, foolproof guide to Alzheimer’s care, given that the disease presents and shifts differently depending on the person. “Each patient’s progression through this disease has its own unique rate, pace, and rhythm,” Verna R. Porter, M.D., a neurologist and director of the Alzheimer’s Disease Program at Providence Saint John’s Health Center in Santa Monica, Calif., tells SELF—and this will ultimately affect what elements of care the individual needs at any given stage of Alzheimer’s.
To provide the best care you can for someone you love with Alzheimer’s disease, you’ll need to be proactive, patient, and flexible as the disease progresses. Here are some expert-backed tips to help you get started putting together a well-rounded care plan for your loved one, and to help navigate the process long term.
1. Get familiar with how Alzheimer’s disease presents and progresses.
This might seem obvious, but you won’t be able to help a person with Alzheimer’s navigate their life unless you have a clear sense of how the disease limits a person, and what treatment and management involves. This is really step number one for a caregiver, Dr. Porter says.
If you’re unsure about where to start, good resources include the Alzheimer’s Disease Education and Referral (ADEAR) Center, the Alzheimer’s Association, and the Alzheimer’s Foundation of America (AFA). You may also want to call your local hospital and ask about learning resources, as they often have educational programs about Alzheimer’s disease and dementia, Dr. Porter suggests.
Speaking with or reading online perspectives of other people who care for someone with Alzheimer’s can also help you see the disease from new perspectives and help you prepare for the more surprising aspects of what care can involve.
2. Assess their support system, and figure out ways to build it out.
Their support system is also your support system, Meryl Comer, founder of the nonprofit organization WomenAgainstAlzheimer’s, tells SELF. You won’t be able to be there every second of every day; things come up where you need additional help and a contingency plan, explains Comer, who has been a caregiver in her home for 22 years to both her husband (who experienced early-onset Alzheimer’s) and her mother.
“Everyone, and especially a caregiver, needs a break,” Dr. Porter says. This is where respite care comes in: Respite care just means someone steps in to provide care and give the primary caregiver some time away from their duties, while still keeping the individual with Alzheimer's in a monitored environment, the Alzheimer’s Association explains.
Respite care could be in-home visits from friends or other family members or by a volunteer or paid service. Or, you can look for adult day care centers in your area, where your loved one can be with other people with Alzheimer’s in a social setting for a short-term period, or even for an overnight or extended stay, depending on the care center’s services.
Sit down with trusted friends and family members who live in close proximity to the loved one with Alzheimer’s to discuss whether they are willing to be involved in the person’s ongoing care. It’s not a one-person job, so it’s important to reach out as early on as possible to let people know their help may be needed and is greatly appreciated.
Some families also have to find ways to provide care long distance, Comer points out. “That might mean one of your sisters flies in for a period of time to take care of Mom, and then your brother drives down to take over next,” she explains. These arrangements take patience and tough conversations to come up with a system that protects the loved one with the disease, but also the mental and physical well-being of everyone involved, she describes. "You don’t want to wait for a crisis and have to rush and come up with a solution.”
3. Decide whether or not you will care for your loved one in their own home.
In the early stages of Alzheimer’s disease, a person may be OK to stay in their own home with the appropriate supervision and assistance, especially if they live with someone else (like a partner or family member) who is willing and able to take on caregiving roles. If they live alone, “identify someone who can visit regularly and be an emergency contact and health care advocate,” Dr. Porter says.
You’ll want to do a thorough in-home safety check to make sure the home is set up in a way that reduces risks of injury or confusion and distress for the person with Alzheimer’s. This might include things like turning the volume on the phone ringer down to avoid startling them, posting emergency contact numbers in a visible place, putting a spare key somewhere you can access it if they lock themselves in or out, and covering unused electrical outlets, the National Institute on Aging recommends.
You might want to consider doing a social work consultation for a comprehensive in-home safety check and evaluation. (Medicare may cover the cost of these types of services.) Also, “Consider the need for a medical alert bracelet or possible safe return program,” Dr. Porter says.
4. If you can’t care for them in their home, look into—and vet—other care services.
During more advanced stages of the disease, unsupervised living likely isn’t feasible. “In daily life, most patients with a developing dementia syndrome require oversights of instrumental activities of daily living,” Dr. Porter notes.
That includes everything from preparing meals and helping with laundry, to making sure they take their medication and helping them go to the bathroom and bathe. If you or someone you trust can’t be there around the clock to assist with daily living tasks, you may have to think about an adult home or in-home aide. (Incontinence and behavior that is endangering to themselves or others tend to be signs that full-time aide is necessary, Comer points out.)
“It is common for families to be concerned about the dependability of the aide or service,” Dr. Porter says. “Those who work for an agency or facility should be reliable and well trained, and are often certified, licensed, and insured.” Ask each individual and facility about training and qualifications. “If you’re hiring someone independently, interview the person thoroughly and check their references and background,” Dr. Porter says.
It’s also worth asking about the staffing ratio of patient to caregiver, Comer says. “The best is three to one,” she says, meaning three patients are assigned to one caregiver. If you only have physical or financial access to an institution where a large number of patients are assigned to one caretaker, you may want to spot-check the facility and the care by showing up at unexpected times, she suggests.
The cost of in-home care services and assisted living facilities can be quite expensive and are generally not covered by insurance. So you may need to try and craft a schedule in which you and/or other trusted friends or family cover certain days and shifts and fill in the gaps with external care services as needed to keep costs down.
5. Assemble their medical team and map out what their ongoing medical care will look like.
“A diagnosis of Alzheimer’s disease will involve use of medications, scheduled and consistent visits with physicians—ideally including a dedicated memory specialist—and frequent re-evaluation of medical, physical, and psychosocial needs,” Dr. Porter explains.
Someone with Alzheimer’s may work with experts of the following medical specialities:
- A geriatrician, who is a medical doctor who works with older adults
- A geriatric psychiatrist or psychologist, who specializes in mental and emotional problems of older adults who have problems with memory and thinking, and/or in the mental health needs of the elderly and their families
- A neurologist, a physician who focuses on abnormalities of the brain and central nervous system and can conduct in-depth neurological evaluations and provide specific diagnoses of cognitive disorders
- A neuropsychologist, who can perform tests of memory and thinking to determine a person’s specific impairments and how they may impact daily functioning
You may not need to or choose to work with all of these types of medical providers, but it can be helpful to have a few names of experts you’re interested in working with from various fields ready as the person’s condition shifts or progresses.
The patient’s primary care physician can oftentimes make the appropriate referrals to the right types of subspecialists that they will need to oversee the care and treatment, Dr. Porter says. She adds that university centers often have Alzheimer’s disease research centers, which have teams of specialists who help with the appropriate diagnosis and subsequent care of patients with Alzheimer’s.
People with an Alzheimer’s diagnosis should be seen at least annually by their medical providers, Dr. Porter says, and ideally every six months. “Depending on specific concerns and issues that may arise, they may require more frequent and consistent visits with various subspecialists,” she says.
6. Track their symptoms and behaviors over time.
There are many potential symptoms that people with Alzheimer’s may display at various stages, and symptoms also vary from person to person. So monitoring changes in their behavior as time goes on and keeping notes and records with these details can be very useful information for their health care providers as they help tailor care and treatment. “This is also important information to share with relatives who may not be around to witness behavior changes themselves,” Comer says. “All caregivers involved should be on the same page.”
If, for example, your loved one is gradually forgetting more words and places or has increasingly poor judgment, these would be things to document and bring to the attention of the person’s health care provider.
7. Honor their independence and identity as long as you can.
“Your top priority when it comes to providing care is to help prolong their dignity and independence as long as possible,” Comer says. So instead of jumping in and taking over all tasks and responsibilities, which can confuse or agitate the person with Alzheimer’s, “think of it more as if you’re running interference for them,” she says.
For example, “You might pack an extra set of clothes when you go to a dinner party together in case of an accident, or make sure they get seated beside someone at the table who knows the situation and is sensitive to it,” Comer explains. “You don’t want to keep them from living their life and being socially engaged, you just want to plan ahead and anticipate any issues you can.”
You also want to play to their hobbies and passions as much as possible, which helps to maintain their identity. Maybe that means playing tennis and golf with them for hand-eye coordination, Comer explains. For example, her husband was once a long-distance runner, and she used to “walk her husband six miles a day to calm him down.”
Caring for someone with Alzheimer’s can be tricky and ever-changing, so it’s worth considering working with an expert to help put together a care plan that makes sense for your loved one.
If you feel lost and overwhelmed, it can be beneficial to consult a social worker or geriatric care manager (e.g. through the Alzheimer’s Association or other support agencies) to help facilitate and organize a care plan, Dr. Porter says.
And don’t forget to have a care plan for yourself, too. “You have to preserve your mental health, continue exercising and eating well, sleeping enough,” Comer says. “Providing Alzheimer’s care is a years-long road, and you can’t do it and do it well without taking care of yourself.”