The impact of Alzheimer’s on families
Alzheimer’s disease (AD) is the leading form of dementia in the U.S., with an estimated 6.7 million Americans over 65 — 10.9% of the population — living with the illness in 2023. Although Alzheimer’s usually develops in older adults, approximately 200,000 people between the ages of 30 and 64 struggle with this disease.
World Alzheimer’s Month is a time to reflect on the impacts of this disease globally. However, caregivers who spend their days with a loved one struggling with this illness know it is a year-round endeavor. Caregivers play a critical role in Alzheimer's care but often face various challenges and obstacles without the support they need to navigate them. Caregiving can be arduous and lonely, leading to detrimental physical and emotional impacts on the caregiver, which in turn, can negatively affect the outcomes of their Alzheimer’s patient.
The role of caregivers in Alzheimer’s care
Family and friends provide more intensive care for patients with Alzheimer’s than patients with other illnesses. The average life expectancy for a person in the later stages of Alzheimer’s is 10 years, with family members often assisting with a significant portion of daily self-help and mobility tasks.
Non-professional caregivers also provide emotional and cognitive support.
Although the frequent need to eventually move patients into a full-time care facility alleviates the physical care family members provide, these caregivers are still heavily involved in supporting their loved ones emotionally. Additionally, they interact with facility staff, coordinating care and advocating for their loved ones.
What challenges do Alzheimer’s caregivers face?
Alzheimer’s care is an emotionally and physically demanding responsibility. The caregiver often must contend with the emotional, behavioral, and cognitive impacts of AD symptoms, such as declining memory and communication abilities, frustration, anger, and depression.
In their journey to support their loved one, caregivers also face:
- A lack of training
- Loss of their support networks
- Struggles with the cost of care
What symptoms do caregivers report?
The lack of support and the level of care people with Alzheimer’s require have significant consequences for the caregiver. Stress is an important concern, and in surveys, it is among the highest reported symptoms caregivers say they experience:
- 59% of caregivers report their stress levels are high or very high
- 44% experience anxiety
- 20%-30% have depression
- 38% rank the physical burdens of providing care as high or very high
- 74% reporting concern about their own health due to caring for a person with Alzheimer’s
Caregiver support can reduce burdens
Caring for a patient with Alzheimer’s is challenging, but providing support for the caregiver can reduce the burdens, lowering the emotional and physical stress for caregivers and leading to better patient outcomes. The caregiver’s and their loved one’s quality of life improves.
In most states in the U.S., the primary family member responsible for an ill relative can apply to become a designated caregiver for that individual, explains Allison Combs, Head of Product – Payer Clinical Effectiveness at Wolters Kluwer, Health. That authorizes the caregiver to access to certain information pertaining to their loved one’s health they wouldn’t otherwise be able to view due to HIPAA.
“Payers already have the infrastructure in their systems to keep track” of the designated caregivers of their members, Combs says, particularly if those caregivers are also members of the same plan. “That provides a unique opportunity to be able to send and facilitate additional support and care for that caregiver. Caregivers might be receiving general population health and wellness materials, but they might not know that there are additional resources they have access to because of their loved one. And they may not realize that they can watch these kinds of programs, first and foremost, to better understand what their loved one is going through, and also some of the things that they have to consider for taking care of themselves.”
Types of support include:
- Educational: Receiving educational support gives caregivers the knowledge and skills to provide more efficient and effective care. These programs can include training on how to adapt schedules, communication, and activities to meet the needs of people with Alzheimer’s. They may also include information on how caregivers can maintain their own health while still providing care.
- Emotional: Support groups can be a critical source for caregivers. These groups provide an outlet and connect caregivers to others who understand what they are going through. Counseling services are also available.
- Financial: Caregiver support includes financial assistance. In many states, Medicaid will pay a family member for the service they provide. Long-term care insurance and veterans’ programs also provide an avenue for caregivers to receive payment.
Supporting caregivers improves outcomes for patients with AD, improving behavioral and emotional symptoms, enhancing cognitive skills, delaying movement to a facility, improving quality of life, and delaying mortality.
The role of health plans and healthcare providers in caregiver support
Health plans need to prioritize caregiver support, which can result in improving patient outcomes, reducing the strain on the healthcare industry for Alzheimer’s patients and family members providing care and lowering costs for health plans. Furthermore, providing support can lead to improvement in HEDIS and Star Rating performance.
Combs notes that hospital or provider visits are meant to be solely focused on the health needs of Alzheimer’s patient and generally don’t offer space for wider family concerns. Additionally, emotions can run high at these appointments, making it hard to remember all that was said. “It’s helpful to have that asynchronous follow-up information from health plans for both the member patient as well as their loved one caregiver, assuming they have designated access, to be able to answer questions.”
Star Rating improvement potential
How can payers seeking to maintain their competitive edge in this marketplace adapt? In a sponsored Fierce Healthcare piece from March 2023, Optum outlined actionable tips for payers looking to improve Star Ratings. One such tip — calling for a focus on care coordination — touched on the importance of delivering a “personalized experience that helps Medicare members and their caregivers more easily navigate health care.”
Support along the entire provider-patient relationship is a good starting point. It begins within their own care management programs. As HealthPayerIntelligence indicates, care management can and should be a value driver for payers.
How can payers provide value for Alzheimer’s patients and caregivers and achieve Star Rating improvement using Optum’s suggestion of a personalized experience? They can start by ensuring their care management platform has a consumer-centric approach. UpToDate Member Engagement solutions provide evidence-based, consumer-centric caregiver support and options for personalized member educational experiences.
The way forward for Alzheimer’s education content
Providing caregiver support is crucial for both the caregiver and the person with Alzheimer’s. Educational support is one of many important support pillars for caregivers but can be crucial for giving family members the skills and resources they need to assist their loved ones better while also looking out for their own health and wellness, leading to more positive experiences for the patient and the caregiver.
Health plans and providers offering caregiver support through care management and outreach programs will likely see Star Ratings improvement and lower the overall strain on the industry.
Explore care management member outreach and education solutions.