En español | More than 16 million Americans serve as unpaid caregivers for people with Alzheimer's disease or other forms of dementia, and more than half have been doing so for at least four years, according to a 2020 report from the Alzheimer's Association. These family members and friends face the normal stresses of caregiving plus other, unique challenges.
Most distressing can be having to learn how to interact with a loved one whose cognitive decline results in erratic behavior and personality changes.
In the early stages of the disease, the impairments may be relatively minor. Make the most of that time together, and encourage your loved one to join you in developing a care plan.
These steps and tips can help you adapt to your role as a care partner.
Clarify the diagnosis
Someone who appears to have memory and thinking problems should see their primary care physician about the symptoms.
The doctor may refer the patient to a specialist, such as a neurologist, neuropsychologist, geriatrician or geriatric psychiatrist, for a comprehensive medical workup, including brain imaging.
While no single test exists for the most common form of dementia, Alzheimer's, doctors are able to rule out many other causes of memory problems, including depression, alcohol abuse or side effects from medications. Alzheimer's is a life-changing diagnosis; you want to be sure it's accurate.
- Recognize warning signs. These can include misplacement of items, confusion with time or place, mood or personality changes and unwise financial decisions — odd or extravagant purchases or donations, for instance.
- Record the facts. Your loved one might not remember key points discussed during medical appointments. If you can't be there, suggest the patient bring along a digital recorder or a friend to take notes.
- Stay positive. While no treatments can stop Alzheimer's, some medications can address its symptoms. And a healthy lifestyle, including staying active and socially connected, can allow someone with dementia to maintain a meaningful and vibrant life for many years.
Focus on finances
On average, individuals with Alzheimer's live for four to eight years after their diagnosis, but some live as long as 20 years, according to the Alzheimer's Association.
That can mean high health care and caregiving costs over the long term. You and your loved one will need to develop a strategy for how you might afford it.
It's also crucial for someone with signs of dementia to shelter their assets — they're extremely vulnerable to exploitation — and to give someone they trust access to financial information and the legal authority to make decisions when they become incapable of doing so themselves.
- Start the discussion. It's often difficult to talk about money, but if you are the primary caregiver, you need to get the lay of the land. Respectfully ask your loved one for access to bank accounts and health insurance policies so you can see how much is available to cover potential costs.
- Secure official permission to share information. Ask if your loved one is comfortable with doctors, hospitals and insurance companies sharing information with you. If still capable of making this decision, the person can sign the papers or make the calls necessary to give you or another trusted party access. Don't forget things like banks and utilities; you may end up becoming the bill payer.
- Address legal issues. If no durable power of attorney for health care and financial decisions has been designated, ask whether your loved one would like you or someone else the care recipient unequivocally trusts to take on that role. If your loved one doesn't designate a power of attorney and later becomes incapable of choosing one, the courts will have to step in.
- Stay alert to abuse. Note financial abnormalities, such as unpaid bills or unexplained bank withdrawals, or unusual visitors. Be especially cautious if your loved one mentions someone you've never met who's been particularly “helpful."
Make a plan
As Alzheimer's progresses, you may need more caregiving help, so it's good to start out thinking long term. You can't anticipate every situation, but being forward-thinking now will help you respond more quickly and effectively in an emergency.
It's also key to spread caregiving tasks around your team from the get-go. You can't do it all.
- Build your team. Beyond medical professionals, reach out to friends, family and community resources to form a larger network of caregiving helpmates.
- Determine tasks. Ask team members what they're willing to do to contribute to your loved one's care. Is someone available to travel to medical appointments? Prepare meals a few times a week? Even if team members live far away, they can handle jobs like ordering prescriptions or paying bills. Encourage them to stay connected to your loved one; dementia can be extremely isolating.
- Listen to your loved one. To the extent possible, the person you're caring for should always participate in discussions about needs and plans. Consider the recipient of your care the most important member of your caregiving team.
Address safety concerns
You'll need to consider a range of potential hazards, and they'll change over time. Is it safe for your loved one to drive? Is the recipient of your care prone to falling, or at risk of wandering and getting lost?
You eventually may need to make home modifications and acquire special equipment such as a hospital bed or lift chair. Useful tools also can help prevent wandering and other safety issues common to dementia patients.
- Prevent falls. Some basic, low-cost changes include removing trip hazards such as throw rugs, making sure the home is well lit (use automatic nightlights) and installing safety features such as handrails, grab bars and adjustable shower seats.
- Stop them from wandering. Six out of 10 people with dementia wander from home, according to the Alzheimer's Association. A predictable routine can help avoid disorientation and subsequent excursions. You might also consider installing remote door locks or alarms, or locks far above or below eye level. The Alzheimer's Association offers a 24-hour nationwide emergency response system, MedicAlert with Wandering Support, for an annual subscription fee.
- Anticipate other risks. Dementia brings with it particular worries about self-injury. To lower the risk, keep medications in a locked drawer or cabinet, disable the stove when not in use and lower the water heater temperature to 120 degrees Fahrenheit or less.
- Recognize driving dangers. Impaired driving isn't only a danger to the driver. It can — and does — harm others. Discuss your concerns with your loved one. If the person is resistant to giving up the car keys, consider asking a physician to weigh in. Be empathetic about the loss of freedom, a common fear.
Care for yourself
Caring for someone with dementia can be a long, difficult journey that takes a heavy toll on the caregiver, raising your risk of depression and other health problems.
Spouses of people with Alzheimer's often find themselves socially isolated as friends may grow distant. It's imperative that you find some form of support and set aside time to address your own health issues, both mental and physical. You can't care well for others if you don't care for yourself.
- Join a support group. Even when you love the person you're caring for, you also may feel anger, resentment or grief. Many caregivers find great relief in sharing their feelings with other caregivers who've felt much the same way.
- Address depression. If you feel sadness and anxiety that lasts for weeks at a time, are sleeping too little or too much or have other symptoms of depression, talk to your primary care doctor. He or she may suggest you see a mental health professional. Depression is treatable; you needn't suffer through it.
- Take time out. Don't neglect exercise, sleep, healthy eating and activities that bring you pleasure. Maybe find a relative who can fill in to allow you a vacation, or even a quiet staycation. Look into other options for respite care in your area.
Editor's note: This article was published on October 31, 2019. It has been updated with data from the "2020 Alzheimer's Disease Facts and Figures" report by the Alzheimer's Association.
By the numbers: Alzheimer's and dementia care
- 16.3 million Americans served as unpaid caregivers for people with Alzheimer's and dementia in 2018.
- They provided 18.6 billion hours of care with an economic value of $244 billion.
- 86 percent have been caregivers for at least a year, 57 percent for four years or more.
- About a quarter are “sandwich generation” caregivers, looking after both an aging parent and children younger than 18.
- 1 in 3 provides help with personal care such as bathing, eating and going to the bathroom.
Source: "2020 Alzehimer's Disease Facts and Figures," Alzheimer's Association