What It Does to You

Dementia caregivers average 6.2–6.4 hours of fragmented sleep per night. This is not insomnia from worry. It is forced sleep deprivation caused by a person who may wander, fall, call out, or become aggressive at 2 AM, 3 AM, 4 AM — every night, for years. Sleep deprivation at this level impairs judgment, accelerates cognitive decline, suppresses immune function, and is independently associated with cardiovascular disease, diabetes, and early death. It is the foundational driver of nearly every other symptom of the syndrome.

You grieve a person who is still alive. Your spouse, parent, or sibling is physically present but psychologically absent. They may not recognize you. They may call you by the wrong name or become afraid of you. The person you loved is disappearing incrementally, and there is no funeral, no closure, no social permission to mourn. This is ambiguous loss — described by Pauline Boss as the most stressful form of grief because it has no resolution. It continues for 5–8 years on average, and it is largely invisible to others.

You resent the person you love for destroying your life. Then you hate yourself for feeling resentment toward someone who is sick. The guilt intensifies the caregiving. The intensified caregiving deepens the resentment. This is not a character flaw — it is a documented psychological cascade that traps caregivers in an escalating cycle. It drives isolation (you cannot admit these feelings), depression (the guilt becomes self-directed rage), and delayed help-seeking (you don't deserve help if you're this terrible).

Friends stop calling. Invitations stop coming. You can't leave the house because there is no one to watch them. When you do see people, you cannot explain what your life is actually like. "How are you?" becomes an impossible question. The isolation is both practical (you physically cannot leave) and social (people withdraw from dementia because it frightens them). By Year 3, most caregivers report that their social network has contracted to near-zero. The invisibility is compounded by a healthcare system that does not see you as a patient, an employer who does not see you as disabled, and a society that calls what you do "a labor of love."

Dementia caregiving routinely destroys family relationships. Siblings who do not help. Spouses who cannot understand. Children who lose a parent to the caregiving. Conflict over care decisions, money, placement. The primary caregiver bears the burden while others offer opinions from a distance. These fractures often never heal. Families that were functional before the diagnosis fragment under the sustained pressure, and the caregiver loses not just the person with dementia but their entire family system.

You stop being a person and become a function. You are no longer a professional, a friend, a partner, a parent with your own needs. You are "the caregiver." Your interests, goals, relationships, and sense of self are subsumed by the caregiving role. Over years, this erosion becomes so complete that when caregiving ends — through death or placement — many caregivers report not knowing who they are anymore. The post-caregiving identity crisis is itself a significant clinical challenge, with 41% experiencing depression 2–3 years after caregiving ends.