Linda Okafor, MSW
Licensed Clinical Social Worker, Elder Care Specialist
Linda is a licensed clinical social worker who has worked in elder care for 15 years, helping families navigate the emotional, logistical, and systemic challenges of caring for aging parents.
What's the first thing you tell a family when they come to you newly navigating a dementia diagnosis?
I tell them three things. First: this is a marathon, not a sprint. The decisions you make in the next few weeks are important, but they are not irreversible, and you don't need to figure everything out today.
Second: the medical system is not set up to support you, and that is not your fault. You will need to advocate loudly and persistently, and it's okay to be the "difficult" family that asks a lot of questions.
Third: you are going to grieve, and that grief deserves space. The loss of the person your loved one used to be — before the disease — is a real loss, and it coexists with the ongoing love you feel. Both things are true.
What services do families most frequently not know about?
The programs through the Area Agency on Aging (AAA) are drastically underutilized. Every community has one, and they can connect families with respite care, meal delivery, transportation, caregiver support groups, legal services, and more — often free or on a sliding scale. I always ask families: have you called your local AAA? The answer is almost always no.
PACE programs — Program of All-Inclusive Care for the Elderly — are another underutilized resource that can provide comprehensive medical and social care for eligible individuals as an alternative to nursing home placement.
What do you wish caregivers knew about their own worth?
That their wellbeing is not optional. That the concept of "putting the oxygen mask on yourself first" is not a metaphor — it is a physiological reality. You cannot sustain care provision from an empty reservoir. Your needs are not in competition with your loved one's needs; they are part of the same care equation.
I also want caregivers to know that if they eventually need to make the decision to transition their loved one to memory care, that is not failure. That is wisdom. Sometimes the most loving thing you can do is to recognize the limits of what one person can provide and access the professional care team that can do more.