By Folks Stories
Alzheimer’s is often called the “family’s disease.” There’s a reason for that.
Over the last year or so, a relative of mine has become more forgetful. She doesn’t recall things people tell her just minutes before, and becomes frustrated when she feels that people are condescending to her. Yet without their intervention, she forgets things both trivial and profound — whether she has eaten breakfast, for example, or whether her aunt has died.
Although she has not been diagnosed yet, signs point to some sort of dementia, possibly Alzheimer’s. They call dementia a “family disease” because it affects not just the individual, but the family: studies show that supporting someone during this time is time-, energy-, and heart-consuming. But we’re all in it together, so while we wait for more tests, my family tries to support her as best we can.
I, too, am trying to prepare to do my part. But what can I do? What can I say? How do you help a person improve their quality of life while maintaining your own mental and physical health in the onslaught of a disease like dementia?
I didn’t know, so I asked an expert for tips on how to guide families in becoming effective, loving caregivers.
Ruth Drew, a licensed professional counselor, is the director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago. There, she leads the work of The Contact Center, a nationwide 24-hour helpline offering information and counseling to people affected by Alzheimer’s disease.
Drew has a personal interest in the work of the Alzheimer’s Association because her late grandfather had the disease. She told me more about what I could expect, and how I could be there for my loved one as she voyaged into the foggy, undiscovered and unpredictable world of dementia.
The goal is to be so much more than caregivers or well wishers for family. What I’ve learned from Drew’s insight is to not only show love and empathy, but to also practice gratitude each day; gratitude for the one life we have, and gratitude to be a source of strength when our loved ones are losing theirs.
Why is dementia referred to as a family disease?
A diagnosis of Alzheimer’s disease or other dementia impacts the entire family. It exacts a considerable emotional, mental, physical and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief and sadness.
Are scientists finding that families who provide support and/or who are educated on the disease have a positive impact on people with dementia?
Being an informed caregiver is one of the greatest gifts you can give to a person living with Alzheimer’s and other dementias. The more you know about the disease, its progression and what to expect, the better prepared you’ll be to navigate its challenges. Since both Alzheimer’s and dementia are progressive diseases, the needs of the person living with the disease will escalate over time. Anticipating and preparing for the changes, including securing additional help as needed and availing yourself to available resources, is beneficial to both the person living with the disease and their caregivers.
What are some of the first steps a family can take when learning a loved one’s diagnosis?
Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing, not only for the person receiving the diagnosis but for their loved ones as well. There is no one right response to a diagnosis, but it’s important for family members to be supportive during this difficult time. While the individual living with the disease is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance. This can include helping a loved one identify new priorities in the wake of a diagnosis and steps you can take together to move forward, finding new ways to live a positive and fulfilling life. In addition, it’s important to discuss more practical matters such as legal, financial and long term care planning. While these conversations can be difficult, providing the person living with the disease a voice in these important issues can help guide future decisions.
What should family members be mindful of when trying to communicate with a relative who may lose their train of thought or become frustrated from the inability to communicate effectively?
Communication with a person with Alzheimer’s requires patience, understanding and good listening skills
Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In the early stage of Alzheimer’s disease, an individual is still able to participate in meaningful conversation and engage in social activities. However, he or she may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right word. Here are a few tips for successful communication:
- Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.
- Don’t exclude the person with the disease from conversations with others.
- Speak directly to the person if you want to know how he or she is doing.
- Give the person time to respond. Don’t interrupt or finish sentences unless he or she asks for help finding a word or finishing a sentence.
- Explore which method of communication is most comfortable for the person. This could include face-to-face conversations, email or phone calls.
- It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
- Be honest and frank about your feelings. Don’t pull away; your friendship and support are important to the person.
How should family members respond when their loved one exhibits troubling behavior?
When a person [with dementia] behaves in a way that doesn’t make sense… we need to remember that their behavior makes perfect sense to them.
First, it is important to remember that all behavior is communication. People with Alzheimer’s or other dementias often have difficulty communicating their thoughts and feelings in the usual ways. When a person behaves in a way that doesn’t make sense to a family member, we need to remember that their behavior makes perfect sense to them. Instead of dismissing the behavior, do a little detective work to try to understand. People with Alzheimer’s sometimes become anxious or aggressive. They may repeat themselves or withdraw from activities they used to enjoy. When this happens, try to figure out what they are communicating. Are they in pain, cold, hungry, sad, bored or lonely? Are they bothered by something in their environment? Sometimes we can decode the situation and help. Even when we can’t figure it out, we can respond with kindness and respect knowing that it is always worth the effort.
How important is it to establish a daily routine, or does it depend on the person and diagnosis?
A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Before making a plan, consider the following:
- The person’s likes, dislikes, strengths, abilities and interests
- How the person used to structure his or her day
- What times of day the person functions best
- Ample time for meals, bathing and dressing
- Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or “sundowning”
Make sure to allow for flexibility within your daily routine for spontaneous activities. As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.
Are there any specific activities a relative could to do with a patient with dementia that you’d recommend in the quest to delay the progress of the disease or improve their condition?
A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves.
Staying physically and mentally engaged is an essential part of living. A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation. Focus on activities the person has always enjoyed and adjust, as needed, to match the person’s current abilities.
For small families, those who live far away, or those who are unable to provide a lot of support, what are some resources available to help improve the quality of life of a person dealing with dementia?
While long-distance caregiving can be challenging, there are resources to help. Learn about what is available in your community by contacting your local Alzheimer’s Association at 1–800–272–3900 or using its online Community Resource Finder. You can also use Alzheimer’s Navigator, a free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
Creative Commons photo at top shot by Jeremy Hiebert.