Supporting a Loved One with a Diagnosis of Early-Stage Alzheimer’s Disease
Getting a diagnosis of Alzheimer’s disease can be a shock, both for the patient and for their caregiver. Though it is likely that both have had an inkling that there are cognitive problems, getting a concrete diagnosis can be challenging for a host of reasons, including the finality of the diagnosis and fears of what is to come.
Typically, the first questions that come to mind for a caregiver of a loved one with Alzheimer’s are focused on the future, such as what to expect from the progression of illness. However, as important as the understanding of the disease is, it’s better to save many specific questions about the disease for later.
Instead, begin by taking time to build a foundation of support for your loved one and yourself that will help you during the coming months and years, no matter where this difficult illness leads.
Here are five important steps to ready yourself after a diagnosis of Alzheimer’s disease:
1. Be Kind to Yourself
It is understandable that you and your loved one will be upset following a diagnosis of Alzheimer’s disease. The upset can take the form of anger, fear, sadness, unfairness, or a combination of all of these. These emotions are all normal, and in some ways unavoidable with this type of illness.
A critical part of facing this type of illness is becoming an expert at giving yourself a break and calming your nerves.
There are several things to keep in mind:
This illness is not your fault. You did nothing to deserve this illness or bring it on. Scientists now understand that Alzheimer’s is caused by a complex mix of genetic and other lifestyle factors that result in an individual developing the disease. The precise causes of the disease is still not understood fully.
You can help slow the progression of this illness. New evidence suggests that, through lifestyle changes, a patient suffering from Alzheimer’s can slow the progression of the disease. You can learn more about this here.
You are likely to experience an increase in emotional stress, which will translate to challenges for your body as well. When a person is emotionally upset, the body responds by producing a suite of “stress hormones” which have various functions designed to help the body though the stress. This is evolution’s way of helping a person through a short term, dangerous event, but if the stress occurs over a long period of time, these same stress hormones can damage your body and mind. Because Alzheimer’s is a very slowly progressing illness, it can lead to long-term stress, and so it is important to learn early on how to reduce your stress, so your body doesn’t pay such a steep price. Techniques for reducing stress include:
Relaxation breathing: Learn how breathing can help reduce stress.
Listening to Music
Exercising – even a 20-minute walk every other day can be beneficial.
Doing hobbies that you enjoy
2. Educate and Empower yourself
We all know KNOWLEDGE can be a powerful tool, giving a caregiver the ability to feel confident and EMPOWERED to make decisions and take actions. Caregivers should seek as much knowledge as they can about Alzheimer’s disease. However, that information should come from trusted sources. Simply searching for information in Google or some other search engine, or an AI engine such CHAT-GPT, can lead to information that is potentially erroneous or outdated.
Instead, explore these trusted information resources:
U. S. Government Agencies:
Area Agency on Aging: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx
State of Florida Department of Elder Affairs and programs of the Alzheimer’s Disease Initiative: https://elderaffairs.org/
Memory Disorder Clinics: https://elderaffairs.org/wp-content/uploads/2023-MDC-Map.pdf
Advocacy Groups
Alzheimer’s Association: www.alz.org
Non-profit and For-Profit Institutions
National Institute on Aging: Alzheimer's and dementia | National Institute on Aging (nih.gov)
Alzheimer’s Association: Basic Information and Overview of Dementia and Alzheimer’s: https://www.alz.org/alzheimer_s_dementia
Mayo Clinic: https://www.mayoclinic.org
Information on Alzheimer’s Research
Clinical Trials.gov: https://clinicaltrials.gov/
3. It Takes a Village…Find your Village
In many areas of life, going it alone isn’t always the best bet. None of us is as good alone as we can be in a group of like-minded folks working together. Imagine a boat on the water with rowers in unison, pulling the boat far faster and further than one rower could do. In a similar way, a complicated illness like Alzheimer’s disease is easier to manage with help from others.
Certainly, family and friends are the first place to look for people to look to for help, but it can be hard to talk about illness with people who love you. If you need help with how to tell friends and family the news about the diagnosis, your Navigator can offer guidance. Once you’ve identified people who are willing and able to help, then as a group you can move forward, together, into the somewhat unknown future.
Another group of people that is critically important is the medical team who will be treating your loved one. While Alzheimer’s disease in its early stages is primarily a cognitive illness, as the disease progresses it fosters physical changes that may need the attention and intervention of a medical team to manage.
The key members of your medical team should include:
Primary Care Provider (PCP). This is your loved one’s “main” physician, who will coordinate your loved one’s ongoing care.
Memory specialist – This specialist could be a neurologist, geriatrician, or geriatric psychiatrist, who will help your loved one with memory issues.
Additional help on your team could include:
A Licensed Clinical Social Worker/Licensed Mental Health Worker: These professionals can provide one on one emotional support.
Speech (cognitive) therapists: These specialists can help with your loved one’s language and other cognitive lapses that impact day-to-day abilities such as taking medications.
Physical Therapists: Research shows that the mind is intimately connected to the body, and so it is important to leverage a physical therapist to help keep physical functioning strong.
Dietician/Nutritionist: A nutritionist help help advise you and your loved one on how to adjust your eating habits to include the important mix of nutrients as outlined by proven diet regimes of the MIND or Mediterranean diets. This is especially useful if you are a diabetic or have another form of a medical diet you follow.
Support Groups for individuals with Alzheimer’s disease: Talk to your Navigator who can direct you to local or online options.
Registered Nurse Care Manager (or Care Manager): Registered Nurses can serve as a personal care advisor. They can provide additional education for a caregiver and loved one, as well as identify resources and other services you may need over the course of the illness.
A trusted counselor or spiritual adviser: No matter what your faith might be, finding someone to discuss spiritual issues with can be fulfilling.
4.Become a Planner
Given people’s hectic schedules, obligations, and competing priorities, many find it very hard to find the time to plan ahead. But when someone’s memory is shaky, a lack of planning can create challenges in meeting day-to-day needs and obligations to family and friends.
One technique for better planning is creating a daily or weekly routine that follows a pattern and can be shared with everyone on the caregiving team. That way everyone, including your loved one, knows what to expect on a given day, and there are no “surprises” or missed appointments.
5. The Power of Positivity
There will be days when caregiving for a loved one suffering from Alzheimer’s will create a challenge to maintain a positive attitude. This is totally understandable, as Alzheimer’s disease is a very difficult disease to care for.
Nevertheless, science has shown that there are many benefits to keeping a positive attitude, even in the darkest times. Positive thinking and emotional stability can make you healthier. When we practice self-care and quiet the stress-induced hormones and chemicals our body produces, our mind is clearer, our heart is less stressed, and our muscles are less tense.
One technique for maintaining a positive attitude is to “practice gratitude” Think about something in your life that is going well, and celebrate it! Making self-care a part of your daily routine will pay dividends and add to the power of positivity.
Coping with the shock of a diagnosis of Alzheimer’s disease can be a challenge for caregiver and patient alike. By focusing, first, on taking care of yourself, finding your caregiving village, getting educated, and fostering a positive attitude, you can navigate the troubled waters of caregiving for your loved one and yourself.
