Alzheimer's Disease In America 2019

Alzheimer’s Survey Finds Type, Level of Care Provided By Caregivers Significantly Differs Based on Patient’s Stage

– Caregivers of moderate-stage patients deeply invested in managing medical care; severe stage patients require more assistance with everyday tasks –

PHILADELPHIANovember 6, 2019 — A new survey from Health Union finds that the experiences of caregivers of people with Alzheimer’s disease differ greatly as the condition progresses through the three stages. Specifically, those witnessing a severe form of Alzheimer’s are more involved in helping the patient complete day-to-day tasks and having tough conversations, caregivers of moderate-stage patients are acutely focused on managing medical care and caregivers of mild-stage patients are dealing with the stresses of caring for a person who is starting to experience memory lapses.

The survey, titled Alzheimer’s Disease In America 2019, illuminates the perspectives and experiences of people living with or impacted by Alzheimer’s disease. The findings also support the launch of AlzheimersDisease.net, Health Union’s 23rd chronic condition-specific online community.

While the total sample was larger, responses from the 181 current caregivers who completed the survey and represent patients with official Alzheimer’s diagnoses help to compile an understanding of how the caregiver experience differs based on a patient’s stage. Nearly half of these caregiver respondents represent patients with moderate (middle stage) Alzheimer’s, more than a quarter represent patients with severe (late stage) Alzheimer’s and more than one in 10 represent those with a mild (early stage) form of the condition. The other 15% were uncertain about their patients’ current stage.

The Alzheimer’s Association describes people with mild Alzheimer’s as functioning independently while experiencing some lapses in memory or concentration. Those with moderate forms of the condition require more care due to more pronounced dementia symptoms and difficulty performing tasks. People with severe Alzheimer’s typically require extensive help with day-to-day tasks and lose the ability to control how they communicate and move.

Caregivers witness and help to cope with a greater number of motor, cognitive and emotional symptoms when caring for patients with a more severe form of Alzheimer’s. According to the survey, these caregivers were more likely than other Alzheimer’s caregivers to say they have patients who recently experienced fatigue, trouble walking, confusion, problems finding words and overall personality changes.

The type and level of care provided by caregivers often varies based on the patient’s current stage. For example, providing help with personal hygiene steadily increases from half of caregivers of mild-stage patients to 77% of caregivers of severe-stage patients. 

Perhaps related to the sometimes lengthy duration of Alzheimer’s middle stage, the survey finds that a large percentage of caregivers of these patients provide various types of support. The support provided by caregivers of moderate-stage patients appears to focus significantly on managing medical care, with 89% citing transportation to and from HCP appointments, 89% helping to coordinate medical appointments and 87% helping to manage or administer treatments.

Caregivers of patients with a severe form of Alzheimer’s are also in a position to have more tough conversations with healthcare professionals. Specifically, they are more likely than caregivers of patients with a moderate form of the condition to have had discussions with HCPs about residential facilities, a living will or advanced directives, palliative care and end-of-life care.

Meanwhile, caregivers of patients with a less severe form of Alzheimer’s are often in need of general information about living with the condition. Caregivers of patients with mild and moderate forms of Alzheimer’s were more likely than caregivers of patients with severe Alzheimer’s to be most interested in information about managing symptoms and healthy habits for people with the condition.

All of this – regardless of the patient’s stage – can take a significant toll on caregivers’ emotional health. Caregivers of patients with severe Alzheimer’s were more likely than caregivers of patients with mild or moderate forms of the condition to say they feel helpless they can’t do more for the patient. People caring for patients with severe and moderate Alzheimer’s were more likely than caregivers of those at an early stage to say they feel they no longer have any time for themselves and worry other family members might be at risk for the condition.

“The role of care partners is always important in the patient journey and, in many ways, more so for Alzheimer’s disease,” said Olivier Chateau, co-founder and CEO of Health Union. “AlzheimersDisease.net and the Alzheimer’s Disease In America findings highlight the challenges associated with the progressive nature of Alzheimer’s disease and symptoms, such as dementia, that can be associated with Alzheimers or a separate issue.”

Alzheimer’s Disease In America 2019 surveyed 581 total respondents – 63 patients, 305 current caregivers and 213 caregivers of deceased patients – from Feb. 7 to June 23, 2019. A summary infographic of the results is available on AlzheimersDisease.net; additional survey results may be available upon request.

About Health Union

Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 24 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Type2Diabetes.com.