How to Be There for Someone Newly Diagnosed With Dementia

In general terms, dementia can be described in three phases: early, middle, and late.

Each phase is unique. What’s more, a person’s character, life experiences, and medical conditions can shape their journey with the condition. These differences, in turn, can impact the experience of their care partners.

Early-Stage Dementia: Processing the Diagnosis

In the early stages of Alzheimer’s disease, the most common form of dementia, a person may feel as if they’re having memory lapses, such as forgetting familiar words or the location of everyday objects.

Someone diagnosed at this stage may grieve the loss of good health and their future as they imagined it, and experience symptoms of depression and anxiety. A dementia diagnosis is difficult to process, and it can stir up complex, negative feelings for both the person diagnosed and care partners. “The weight that comes with hearing that someone has an irreversible brain disease can be devastating,” says Cotenna Clark, NP, of Emory University’s Integrated Memory Care Clinic in Atlanta, who specializes in caring for older adults.

The person newly diagnosed will likely need time to process this diagnosis, which can feel emotionally overwhelming. They may need time alone, want to process with family and friends, or a combination of both. “They’re suddenly having to cope with a disease that could [eventually] end their life, and take away their memory and their ability to be who they once were,” says Clark.

The care partner will also need time to process their feelings, which may look similar to how the person newly diagnosed responds, or very different.

Also, processing the emotions that come with a dementia diagnosis isn’t just a one-time thing. It’s normal to need time and space to process and reflect every time the disease progresses or changes, especially in the earlier stages.

But as far as day-to-day life goes, in the early phase of dementia, care partners may be able to “be there” without making major changes. Ways to offer support at this time include providing minimal reminders and suggestions for everyday tasks, and initiating care planning for the later stages of the condition.

Middle-Stage Dementia: Managing Behaviors

In the middle stage of dementia, people may experience increased forgetfulness and memory concerns. They may also experience aggression, agitation, and psychosis. Deciding how to manage these behaviors can add additional stress to an already overwhelming situation.

If these symptoms and behaviors become distressing to the person living with dementia or the person supporting them, clinicians may recommend medications to minimize these behaviors.

Care partners may need more resources during this phase, which may come from family, community, or the patient’s healthcare team.

Late-Stage Dementia: Looking Into Long-Term Care

During late-stage dementia, the person may have significant changes in their personality and abilities. They’re often unable to do much of anything for themselves, requiring total care.

In this phase, care partners will face new challenges and decisions about how to meet the care recipient’s basic needs, such as feeding, bathing, and toileting.

Care partners may also need to evaluate whether it’s too difficult to care for the person at home, and potentially explore other strategies for how to be there for them in a new care setting, such as assisted living or a long-term care facility.

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