Navigating Dementia as a Couple

When Alzheimer’s enters a marriage or long-term relationship, it doesn’t just affect the one with the diagnosis. Dementia transforms the relationship and the partner’s life in deeply personal, often overwhelming ways.

While this shift can feel disorienting and painful, many couples continue to find meaning and joy in their time together, says James E. Galvin, M.D., M.P.H., a neurology expert at the University of Miami Health System.

That matters for the sake of the relationship and for both partners’ health. Couples who manage to navigate the disease together tend to experience a better quality of life.

Loved ones as first responders in cognitive change

Most dementia cases aren’t initially identified during a 15-minute wellness visit. Instead, they’re first noticed across the kitchen table, while paying bills, or on the hunt for misplaced keys multiple times a week.

A partner is best positioned to observe cognitive shifts, including:

• Repetitive conversations or questions
• Difficulty managing familiar tasks, like finances or using a TV remote
• Disorientation with dates or appointments
• Loss of interest in hobbies or social activities
• Subtle mood changes, such as anxiety, apathy, or withdrawal

Note: These behaviors don’t necessarily mean someone has dementia.

Signs of cognitive decline in one person might be perfectly normal for another.

“My grandmother, who’s now 103, has been repeating herself since I was a child, so this is not a change right for her, but for other people it might be,” says Dr. Galvin.

Speak to a provider if you notice a change over time that’s out of character. For example, many people have trouble with a new remote control, but a sudden challenge with an old remote may be a sign of cognitive change.

If you notice any of these red flags, Dr. Galvin recommends asking the following questions:

• Have they lost interest in their hobbies and recreational activities?
• Is this occurring regularly?
• Is this a change?

Don’t wait if you notice signs of decline.

It may be tempting to overlook signs of cognitive decline, but ignoring them gradually limits treatment options. “We have something to offer someone at every stage of the disease, but we have many more tools at the earlier stages,” says Dr. Galvin.

While dementia is a progressive condition, early treatment can lead to better outcomes, such as a slower decline. Early diagnosis offers a wider range of interventions, such as medications, lifestyle modifications and psychological support.

It also shifts the focus from crisis management to strategic care planning. And critically, early detection preserves people’s autonomy and dignity for as long as possible.

When partners take the lead, everyone benefits

An actively involved partner or spouse caregiver typically improves their partner’s quality of life and even outcomes.

• People tend to remain at home longer
• They’re more likely to adhere to treatments
• Side effects are better managed
• Spouses themselves report lower stress and higher confidence

“When the partnership is working well, the caregiver has less burden and is generally better adjusted to changes occurring, and their loved one has better outcomes,” says Dr. Galvin.

Supporting the patient and the caregiver

Dementia can feel like a shared diagnosis for a spouse or partner dealing with such an all-encompassing disease. “Rarely for diseases like Alzheimer’s are you just treating a patient. You’re treating the dyad — the patient and the caregiver,” says Dr. Galvin.

This is why Dr. Galvin’s team developed the PANAC scale (Positive and Negative Appraisals of Caregiving) to assess the burdens and rewards of caregiving. The tool helps clinicians design interventions that serve the caregiver’s mental health and quality of life, and not just the patient’s condition.

“Not everything about caregiving is negative,” says Dr. Galvin.

He sees caregivers gain a sense of fulfillment by giving back to a loved one and knowing their loved one is getting the best possible care. “There are almost no scales that capture that, so we developed one,” says Dr. Galvin.

In a single scale, the tool captures an individual’s positive and negative aspects of caregiving. “We can use that to design interventions geared toward the caregiver and not just toward the patient,” says Dr. Galvin.

Improving access to diagnostic tools for dementia

Dr. Galvin and his team have also developed tools primary care providers can use to diagnose dementia earlier. “We have lots of sophisticated tools at universities and research centers, but most of those don’t translate to implementation in a doctor’s office,” he says.

To date, Dr. Galvin’s team has designed 22 tools for dementia screening and identifying people at risk. The goal is to develop tools that will work for various populations. “It has to capture the features and risk factors of the disease and work across everybody, or else it works for no one,” he says.

Related read: Are you Vulnerable to Developing Alzheimer’s Disease?

The first step in caregiving is taking care of yourself

Given the abundance of evidence that caregiving can negatively affect your health, caregivers should be extra vigilant in guarding their health and well-being. Caregivers have higher rates of gastrointestinal complaints, inflammatory conditions, headaches and even poorer vaccine responses. “If you don’t take care of yourself, it’s harder to be successful as a caregiver,” says Dr. Galvin.

He recommends the following strategies for caregivers:

• Build and maintain a genuine social network
• Practice mindfulness to improve resilience
• Attend to your own health needs
• Use evidence-based support resources instead of chasing unproven “miracle cures”

A dose of hope and realism

While a dementia diagnosis carries a sense of finality, Dr. Galvin finds that the first conversation is the hardest. Once couples receive confirmation, they can think about what’s next.

Dr. Galvin says a bit of optimism grounded in pragmatism can be a roadmap for patients with dementia and their spouses. “Only once couples accept the diagnosis can we discuss what will benefit the patient and family. Our approach is to make you the best you can be,” he says.

The mindset shift from overwhelmed to empowered partner can be the first step in navigating dementia together as a couple.

Some final tips for caregivers:

Practice mindfulness

Dr. Galvin’s research shows practicing mindfulness by living in the moment and not letting the weight of the world bear down on you leads to better outcomes for caregivers and their loved ones.

Ask for help

Dr. Galvin says he’s always surprised by how reluctant some people are to accept outside help. “I tell all caregivers to be open to accepting help and discussing your troubles with others so you benefit from a social support network.”

Written by Wendy Margolin, a contributor for UHealth.

Tags: Cognitive health, Dr. James Galvin, Early intervention in dementia, Spousal caregiving