Planning After a Dementia Diagnosis
Receiving a dementia diagnosis can feel overwhelming—for both the person diagnosed and their loved ones. While the news may be difficult to process, taking proactive steps early on can help ensure dignity, safety, and quality of life throughout the journey ahead. The nature of dementia means that at some point, the person loses the ability to make decisions for themselves. That makes early planning a top priority following a diagnosis.
Educate yourself first
Knowledge truly is power when it comes to dementia care. Understanding the specific type of dementia, its typical progression, and what to expect can help reduce anxiety and allow everyone to plan more effectively.
Start by learning about the diagnosis. Dementia isn’t a single disease—it’s an umbrella term for several conditions, including Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia. Each type has distinct characteristics and progression patterns. Ask the doctor to give you resources to learn more, including possible treatment options or other therapies.
Be sure to share what you learn with other family members. This helps everyone understand behavioral changes, communication challenges, and how to provide appropriate support.
Find support
Dementia care is rarely a solo journey. Building a strong support network early can prevent caregiver burnout and ensure better care. Support—for both people with dementia and their caregivers—can come in many different forms.
Connect with support groups. Both the person with dementia and their caregivers benefit from connecting with others facing similar challenges. Support groups provide emotional validation, practical tips, and a safe space to share frustrations and fears. Many communities offer both in-person and virtual options. Check the Alzheimer’s Foundation of America or the Alzheimer’s Association for support groups and resources near you.
Build the care team. Assemble a network of healthcare professionals, including a primary care physician, neurologist, and potentially a care manager. Consider adding mental health support—therapists who specialize in dementia can help both patients and caregivers navigate the emotional challenges ahead.
Explore community resources. Adult day programs, respite care services, meal delivery, and transportation assistance can all ease the caregiving burden. Contact your local area agency on aging or Alzheimer’s Association chapter to learn what’s available in your community.
Legal, financial, and long-term care plans
Early planning provides peace of mind and ensures the person with dementia can participate in important decisions while they still have capacity. Work with an elder law attorney to establish essential documents including a durable power of attorney (for financial decisions), healthcare power of attorney, HIPAA authorization, and an advance directive or living will. These documents ensure someone trusted can make decisions if the person with dementia becomes unable to do so. If the person is still in the early stages of the disease, they may also want to update their will and consider setting up a trust for their future care.
It’s also a good time to review your options for long-term care, should it become necessary. While many families hope to provide care at home, dementia often eventually requires more intensive support. Research options in your area including home health aides, assisted living facilities, memory care units, and nursing homes. Understanding costs and availability now helps you make informed decisions later. Some facilities have waiting lists, so early research is valuable.
While a dementia diagnosis changes everything, thoughtful planning can help ensure that you or your loved one lives with dignity, comfort, and the best possible quality of life. Remember that you don’t need to figure everything out immediately. Take things one step at a time, lean on your support network, and be gentle with yourself through the challenges ahead.
The journey will have difficult moments, but it will also have opportunities for connection, love, and meaningful experiences. By planning ahead in these key areas, you’re giving yourself and your loved one the best possible foundation for the road ahead.