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World Alzheimer’s Day 2020: Understanding the Patient Journey

Each year, World Alzheimer’s Day is observed on September 21. The day aims to raise awareness about Alzheimer’s disease, encourage discussion, and challenge stigmas about the condition. Helping people with Alzheimer’s disease understand they are not alone and giving caregivers a better understanding of what people who are living with the condition are going through can make a difference on this day and well beyond.

We conducted our 2nd Alzheimer’s In America survey to learn more about the impact Alzheimer’s disease has on those living with the diagnosis, as well as their caregivers. Nearly 400 people living with Alzheimer’s disease and caregivers completed the survey and provided a unique look at the ways they are managing and coping with the condition in their day-to-day lives.

What is the most frustrating symptom of Alzheimer’s disease?

A person’s experience with Alzheimer’s disease can differ from that of a caregiver, especially regarding symptoms and the frustrations that often come with them.

Both people living with Alzheimer’s and caregivers responded that memory issues are the most frustrating symptom they experienced within the past month. This includes forgetfulness, as well as short- or long-term memory loss. However, 28 percent of people with Alzheimer’s shared that this was the most frustrating symptom, while only 14 percent of caregivers shared the same.

Besides memory issues, there were many differences between the responses of people with Alzheimer’s and caregivers.

People living with the condition shared that they were frustrated by:

  • Memory issues (28 percent)
  • Word-finding difficulties or jumbled speech (12 percent)
  • Fatigue (5 percent)
  • Bowel or incontinence issues (5 percent)
  • Confusion (5 percent)
  • Anger or aggression (5 percent)
  • Loss of interest in activities (5 percent)

Survey responses from caregivers show they are most frustrated by:

  • Memory issues (14 percent)
  • Anger (11 percent)
  • Difficulties in understanding, like following a conversation (8 percent)
  • Bowel or incontinence issues (8 percent)
  • Word-finding difficulties or jumbled speech (7 percent)
  • Sleep issues like insomnia (6 percent)
  • Irritability or agitation (6 percent)

The survey responses show how much those living with Alzheimer’s want to remember and connect with others, but their symptoms make it hard to do so. On the other hand, the survey responses from caregivers show how mentally and emotionally difficult it can be to care for someone with the condition.

How does Alzheimer’s disease affect quality of life?

Alzheimer’s disease can greatly impact quality of life in every stage. While 51 percent* of survey respondents living with Alzheimer’s said they have accepted their diagnosis/prognosis, 58 percent* shared that they worry about their condition getting worse.

Most survey respondents living with Alzheimer’s also feel misunderstood. About 59 percent of respondents shared they are not as likely to feel like their loved ones or people in their support network understand what they are going through.

49 percent of survey respondents said they are finding comfort in their beliefs or faith. 40 percent said they are doing all they can to preserve their memories, and 28 percent are making plans for their future care.

A number of survey respondents also shared that their diagnosis has had far-reaching effects on their mental and emotional health.

Effects of Alzheimer’s diagnosis on mental and physical health, including frustration about lost capabilities, and feeling like a burden to loved ones

Coping with Alzheimer’s disease

Finding ways to cope with Alzheimer’s disease is important for both people living with the diagnosis, as well as caregivers. Coping strategies can help reduce stress, increase quality of life, and improve mood.

Both people with Alzheimer’s and caregivers shared how they are managing/coping with the condition.

Ways to cope with Alzheimer’s including exercise, creating and sticking to a routine, total acceptance, medication, music, and staying busy.

However, about 20 percent of respondents said they do not have any ways to help manage or cope with the condition.

If you or your caregiver are having a difficult time finding ways to cope with Alzheimer’s disease, talk with your doctor. They can help you find different coping tools and strategies. They can also adjust treatment if necessary and connect with support groups for people living with Alzheimer’s disease and caregivers for those with the condition.

Advice for caregivers

People living with Alzheimer’s disease who completed the survey shared information they wish caregivers knew. They were asked, “If you could give your caregiver(s) advice on how to better provide support to you, what would you say to them?” Their responses included:

“Be more aware of my symptoms and what they mean.”
“Please get me back on my feet to a more normal life.”
“Help me understand…help me feel listened to.”
“Spend more time just sitting and talking with me.”
“Please learn about me so there is understanding, not judging.”

*Top 2 box on 7-pt. scale.

The 2nd Alzheimer’s In America survey was conducted online from February to July 2020. 80 people with Alzheimer’s disease and 297 caregivers of people diagnosed with Alzheimer’s disease, dementia, or mild cognitive impairment completed the survey.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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