Empowering Patients, Caregivers, and Primary Care Providers Navigating Dementia Together

From the Desk of the Chief Medical Officer, Dr. Adrienne Mims

Living with dementia or caring for someone with dementia, sometimes can be overwhelming. The primary care system is often the first point of contact for individuals seeking support and guidance in managing this complex condition. However, many primary care physicians are facing a crisis in their practices, with long wait times, brief visits, and challenges in coordinating care with specialists. 

For primary care physicians, it’s important to see the whole picture of a patient’s health, however, sometimes that proves to be difficult. For example, one primary care physician shared a story with me about a patient who came in with her daughter, requesting a letter to get out of a trip that mom had planned without her daughter’s knowledge. This patient had multiple chronic conditions, including diabetes, hypertension, and heart failure. The physician recalled that at the end of the prior visit the patient mentioned that her house had burned down. This led to more investigation into the patient’s health and a dementia diagnosis.  

It is crucial for more primary care clinicians to be knowledgeable about and provide care for individuals living with dementia and their caregivers. Early diagnosis, care planning, and access to supportive resources are essential for effectively managing dementia. The emergence of team care models and value-based payment programs are adapting to provide better support for complex patients, including those with dementia. 

Caregivers play a significant role in supporting individuals living with dementia, but many do not identify themselves as caregivers. The caregiving burden falls heavily on spouses, adult children, siblings and friends, who may not be prepared for the challenges that come with caring for someone with dementia. Caregivers need education, emotional support, and resources to effectively manage the symptoms and provide the necessary care for their loved ones. 

There are numerous resources available to support individuals living with dementia and their caregivers, including educational programs, emotional support groups, and online databases for finding local resources. Best Programs for Caregiving (benrose.org) is an excellent starting point to find local support for caregivingOrganizations such as the Alzheimer’s Association, CDC Healthy Brain Initiative, and the National Institute on Aging offer valuable information. However, many caregivers are unaware of the available resources and struggle to access the support they need. 

Dementia care navigation programs are vital in providing assessments, care plans, education, and access to community resources for individuals living with dementia and their caregivers. These programs offer much-needed support and guidance in managing the challenges of dementia care and can help alleviate some of the burden on caregivers. 

In addition to resources, there is a need for expanded family caregiver support, including paid leave, employer benefits for respite care, and increased access to memory care units with appropriate staffing levels. By investing in resources and support for individuals living with dementia and their caregivers, we can improve the quality of care and overall well-being of those affected by this condition. 

Organizations like Dementia Friendly America are working with communities to transform into places that people living with dementia can thriveBy utilizing resources and seeking support from reputable organizations, caregivers can access valuable information, support, and services to help them navigate the challenges of caring for someone with dementia. It’s important for caregivers to educate themselves about the condition, seek out local resources, and prioritize their own well-being to provide the best possible care for their loved ones. 

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