After more than two decades working in hospice and end-of-life care, I can say that caring for someone living with dementia can be one of the most intense caregiving experiences a family will ever face.
The journey may continue for years. It can affect a caregiver physically, emotionally, psychologically, spiritually, and financially. As the disease progresses, families may experience repeated losses while the person they love is still physically present. Roles and relationships change. Sleep, work, finances, health, and family dynamics can all be affected.
Yet we continue to treat dementia caregiving as though one family member should somehow be able to manage it all. That is impossible. They cannot, and they should never be expected to.
At the same time, many of us have not clearly documented what we would want if we developed dementia. We may have a basic advance directive, but do we have a dementia advance directive?
When we discuss the growing dementia crisis, I believe we must focus on two urgent questions:
How do we support the people caring for loved ones with dementia right now?
How do we protect our own wishes if we develop dementia in the future?
Question One: How Do We Support Dementia Caregivers Today?
The first step is understanding that dementia is not one single disease. It is an umbrella term describing symptoms that affect memory, reasoning, communication, behavior, and a person’s ability to perform everyday activities. Alzheimer’s disease is the most common cause, but there are several other forms of dementia, each with its own progression and challenges.
Dementia also affects far more than memory. A person may experience changes in judgment, personality, sleep, mobility, appetite, language, impulse control, and the ability to recognize familiar people or surroundings. They may become anxious, frightened, agitated, withdrawn, or resistant.
When caregivers understand what may be happening beneath the behavior, they can respond with greater skill and compassion. But education alone is not enough. Even the most loving and well-informed caregiver cannot provide safe, sustainable, around-the-clock care indefinitely without meaningful support.
No One Can Caregive Alone
We need to stop letting one person do the care until they collapse. Caregiving should not require a person to neglect their own medical needs. This past August, Dolly Parton shared how she neglected her own health while caring full-time for her beloved husband.
Telling a caregiver to “take care of yourself” is not helpful if no one is available to stay with their loved one while they rest. Caregivers need tangible support. That may include:
Regular respite care
Help with meals, errands, transportation, and household tasks
A share calendar that allows family and friends to choose specific ways to help
Education about the disease process and what changes to expect
Support groups and opportunities to speak honestly without judgment
Home-safety evaluations
Financial and legal guidance
Adult day programs or professional in-home assistance
Access to hospice or palliative care when medically appropriate
A plan for emergencies and caregiver illness
Most importantly, caregiving must become a shared responsibility. Families, friends, neighbors, faith communities, healthcare organizations, and local communities all have a role to play. Instead of asking a caregiver, “Let me know if you need anything,” we can offer something specific, such as:
“I can stay with your mother every Tuesday from 2 to 5.”
“I’m bringing dinner on Thursday.”
“I can take care of the grocery shopping this week.”
“I will make the phone calls and research respite services.”
“I can sit with you while we complete the paperwork.”
Small, dependable acts of service can become a lifeline.
Question Two: How Do We Protect Our Own Wishes for the Future?
The second question is more difficult, but it is equally urgent: What would we want if we developed dementia?
Most people say they do not want to live for years without awareness, meaningful connection, or what they personally consider an acceptable quality of life.
Planning Must Begin Before a Crisis
Dementia planning must happen while a person still has the capacity to understand their choices, communicate preferences, and complete the appropriate documents.
A strong plan should include a dementia advance directive and thoughtful conversations about the realities of progressive cognitive decline. Consider taking the following steps:
Define quality of life in your own words. Be specific about the abilities, relationships, experiences, and level of awareness that make life meaningful to you.
Put your wishes in writing and even make a video of you sharing them and explaining why you are making the choices you are.
Talk openly with your family. Documents are important, but conversations help loved ones understand the thinking and values behind your decisions.
None of us knows what we will be like as we age, but longer lifespans usually mean we will face physical, cognitive, and/or financial challenges. Planning ahead gives both you and your family a road map.
This Is About Practical Compassionate Planning, Not Fear
Talking about dementia planning is not giving up on life. It is a choice. A social worker I know said that the most common question she gets from dementia caregivers is: “How do I ensure I do not end up in this suspended place, with no quality of life?”
This conversation is about respecting a person’s individual, subjective, informed choice. It is about recognizing that dignity and quality of life are personal. It is about supporting people who are living with dementia today while allowing all of us to express what we would want if we ourselves got a dementia diagnosis tomorrow.