12 Questions To Ask Your Loved One’s Doctor After An Alzheimer’s Diagnosis
Hearing the doctor say, “it’s Alzheimer’s” for the first time often triggers a flood of emotions for people, including shock, denial, and even relief.
Once you work through the initial feelings, it’s wise to talk to the doctor in more depth about the diagnosis and situation. Better understanding translates to a better quality of life for those living with Alzheimer’s disease, and a better support experience for family members and caregivers.
Here are some of the top questions to ask your loved one’s doctor after a recent diagnosis of Alzheimer’s disease.
1. Is it Alzheimer’s or another type of Dementia?
If the doctor says, “it’s Alzheimer’s” it probably is – but sometimes the words “Alzheimer’s” and “Dementia” are used interchangeably, and it’s worth asking to be sure. Different types of dementia progress differently, and specific symptoms and treatments can vary with the exact diagnosis.
What is the difference between dementia and Alzheimer’s disease?
Dementia is a general term for cognitive (thinking) challenges severe enough to interfere with daily life. These can include memory loss, trouble with language or words, impaired thinking skills, and difficulty problem-solving. Behavior changes can often occur as well.
Dementia can be caused by various diseases, including Alzheimer’s, Huntington’s, or Parkinson’s disease.
It can also result from other conditions, such as brain tumors or strokes.
Alzheimer’s disease is the leading cause of dementia in older adults.
Early signs of Alzheimer’s can include difficulty with concentration, memory, language, or judgment, as well as withdrawal from social events and changes in mood or behavior.
Early-onset Alzheimer's (also called younger-onset Alzheimer's) occurs in individuals under the age of 65 – sometimes as young as 30 or 40.
Mild cognitive impairment is sometimes considered one of the early stages of dementia.
Symptoms are mild enough to not interfere with daily life, but over time, often the disease progresses into Alzheimer’s.
2. How was Alzheimer's disease diagnosed in this case?
An accurate diagnosis is important. Many conditions can cause symptoms that look like signs of Alzheimer’s disease, but some can be treated and reversed. After a thorough evaluation, you can feel confident in your loved one’s diagnosis and ready to plan for the future.
How is Alzheimer’s & Dementia diagnosed?
A diagnosis of Alzheimer’s generally follows a series of diagnostic tests, interviews, and procedures.
Your loved one may receive a referral to a specialist, such as a neurologist or a neuropsychologist, to help make the diagnosis.
The doctor will review your loved one’s medical history.
Tests determine whether the memory problems and other symptoms might be related to other issues, such as medication side effects, nutritional deficiencies, or clinical depression.
The doctor often asks close friends, family members, or caregivers to describe changes or challenges they've seen or to describe how the symptoms of Alzheimer’s are affecting your loved one’s daily activities.
Neuropsychological tests can identify problems with mental status, memory, or thinking skills.
Blood tests, neurological exams, and brain imaging tests– such as positron emission tomography (pet scans) and magnetic resonance imaging (MRIs) – are sometimes part of the process of diagnosing Alzheimer’s disease.
These special tests can identify areas of lost brain cells or biomarkers of the disease, such as beta-amyloid proteins.
3. Which stage of Alzheimer’s is my loved one in?
It’s helpful to have a general idea of the severity of your loved one’s Alzheimer’s disease so you'll have a common understanding and vocabulary when talking with others about care, resources, or support.
What are the stages of Alzheimer’s disease?
Alzheimer’s is a progressive disease, meaning it gets worse over time. A variety of scales exist to describe the stages of the disease differently.
Some scales classify stages very broadly, sticking with terms like “early”, “middle”, and “late-stage”.
Detailed scales break down the disease into as many as seven stages.
People don’t always fit nicely into any one stage (especially on detailed scales) and many people fluctuate between stages from day to day.
4. What kind of decline should we expect?
Many factors affect the rate Alzheimer’s disease progresses in each individual. Ask the doctor what to expect in your loved one’s case so you can better prepare for future care needs.
How long will my loved one live with Alzheimer’s?
The life expectancy of a person with Alzheimer’s varies tremendously. On average, a person will live four to eight years after diagnosis, but many factors influence this, and some live over 20 years.
Expect a long, gradual decline in thinking and functioning in Alzheimer’s disease.
Consult the doctor for sudden or drastic changes, which tend to indicate something else is happening (such as another form of dementia, an infection, illness, or unmet need).
5. What can we do to slow the progression of the disease or minimize symptoms?
Ask your loved one’s doctor about what you can do to help keep them at their best. People with Alzheimer’s disease do best when they:
Eat healthy food on a regular schedule
Engage in physical activity daily
Enjoy personally fulfilling, meaningful activity each day
Socialize with others in ways that feel safe and comfortable
Avoid feeling overwhelmed, frustrated, or angry
Maintain positive mental health
Stay comfortable, healthy, and pain-free
What can I do to help my loved one with Alzheimer’s Disease live at their best?
People with Alzheimer’s often have difficulty recognizing or communicating when something is wrong. Instead of using words to express how they’re feeling, they'll often exhibit challenging behavior and experience more confusion and worsening symptoms.
Educate yourself on ways to interact in ways that minimize frustration and extra challenges for your loved one.
6. Can specific medications or supplements help? Are there to avoid?
There are a few medications approved by the FDA to treat Alzheimer’s disease, but they aren’t appropriate or helpful for everyone, and each has side effects to consider.
Additionally, various prescription and over-the-counter medications can create problems for people with Alzheimer’s disease.
Provide the doctor with a list of every prescription and over-the-counter medication and supplement your loved one takes.
Ask them to review the medications for recommendations or concerns.
If the doctor starts a new medication to treat Alzheimer’s, ask:
How long should it take to start working?
How will we know if it’s working?
What types of side effects should we expect?
When would it be appropriate to stop taking it?
Do herbal supplements help Alzheimer’s?
There’s no shortage of herbal supplements or “miracle cures” for Alzheimer’s on the market. It’s easy to buy into these products’ hype out of hope or desperation, but most have no scientific basis and some may interact with other medications to create dangerous effects.
Talk to the doctor before trying anything new to avoid potential problems, such as an increased risk for falls, illnesses, changes in behavior, or other concerns.
7. How should we plan for future care needs?
Some advance care planning documents may require your doctor’s signature and most are best reviewed as early as possible when your loved one can participate most fully in making decisions.
Which Advanced Health Care Directive Documents Does My Loved One with Alzheimer’s Need?
With the right planning, you can ensure your loved one’s future care goes as smoothly as possible, preventing unnecessary suffering for both of you. If you wait too long, you may lose options.
For example, your loved one won’t be able to complete a Power of Attorney (POA) form if their Alzheimer’s is too severe. Instead, you’ll need to petition for guardianship to make decisions on their behalf – a much more intensive, expensive option than a POA.
Read more about Legal Documents for Caregivers
8. Where can we find education, help, guidance, and support?
Having access to support, guidance, and good advice in the right moments can make a huge difference in your loved one’s quality of life. However, finding help isn’t always easy. Your doctor may be able to point you in the direction of some good local resources.
Where can I find resources to help me care for my loved one with Alzheimer’s?
Education opportunities, resources, and support can be found through a variety of avenues.
A geriatric care manager versed in dementia can offer personalized guidance.
Dementia caregiver support groups can be valuable sources of advice.
Adult day programs for those with dementia can provide support and respite for your loved one and guidance when you need it.
These organizations can help you find resources, services, and support:
Ready Set Care’s Care Community provides no-cost access to caregiving experts who can answer your questions about caring for your aging loved one. You’ll also benefit from support from other family caregivers.
Alzheimer’s Association’s Resource Finder helps you locate nearby dementia care programs, services, and resources.
Dial 2-1-1 to find an array of local resources and services.
The Eldercare Locator is provided by the U.S. Administration on Aging to connect the public with services for older adults and their families.
Your local Area Agency on Aging is the go-to hub for all local resources and services to support older adults.
9. Is it safe for my loved one to continue driving?
A diagnosis of Alzheimer’s doesn’t automatically mean your loved one can no longer drive – especially in the case of an early diagnosis – but it should trigger a conversation about driving safety, and the doctor’s input on this topic is invaluable.
When should they stop driving?
Ask for the doctor’s opinion on whether it’s still safe to drive.
Consider which warning signs you should watch for that might indicate it’s time to stop.
Discuss alternative ways of meeting transportation needs. Giving up driving can increase your loved one's risk of isolation, which can be incredibly damaging, so figure out how to keep them socially engaged in activities that matter to them.
Review the National Institute on Aging’s guide to Driving Safety and Alzheimer’s Disease.
Read more: Senior Driving: What to Know Before Asking for the Keys
10. Would palliative care help us?
Palliative care is a special support program for individuals with terminal illnesses, including Alzheimer’s disease. It requires a doctor’s order for insurance to cover it. The goal of palliative care is to manage symptoms, minimize suffering and maximize the quality of life for the patient and their family. Getting started early can prevent needless suffering in the months and years ahead.
What is palliative care?
A palliative care team can provide oversight, support, and guidance to you and your loved one with Alzheimer’s disease. It’s available for patients at any point after a diagnosis, not only at the end of life like hospice care.
Learn more about Palliative Care and how it can help you and your loved one with Alzheimer’s
11. Is it safe for my loved one to live at home?
From falls to kitchen fires to getting lost, safety is a big concern when someone is diagnosed with Alzheimer's. Talk to the doctor about any immediate safety concerns that may need to be addressed, then start working on a plan to ensure your loved one will continue to be safe as the disease progresses.
When will we need to consider a move to a facility?
People with Alzheimer's can live at home safely with the right support for quite a while – sometimes their entire life under the right conditions. However, in many cases, moving to a facility is the only option to meet a person’s care needs after a certain point.
Hired home care can make an enormous difference in supporting someone at home.
Even if you don’t anticipate an immediate move it’s wise to do your homework and plan ahead so that you’re not left scrambling in the event of a crisis.
Warning signs that it’s time to think about a move include
Difficulty with mobility, behavior, or personal care that can’t be managed by caregivers at home
Social withdrawal or isolation
Family caregiver feeling exhausted or unable to keep up with care needs
12. Should we consider joining any clinical trials?
Clinical research trials offer a number of both pros and cons for people with dementia and their caregivers. The doctor can help you weigh them in your situation.
How can I find a clinical trial for Alzheimer’s?
Visit Alzheimers.gov to access the U.S. Department of Health and Human Services web search to find research studies for people with dementia and their caregivers.
Education and Communication are Key to Living Well with Alzheimer's
Dealing with a new diagnosis of Alzheimer's disease can feel overwhelming and it's not always clear where to begin.
Start by asking these questions – and any others you might have – of the doctor to give yourself a better understanding of what may lie ahead. You'll be able to make choices that lead to better experiences for yourself and your loved one as you both adjust to life with Alzheimer's.