Whether you’re married or dating, together for months or decades, an Alzheimer’s disease diagnosis can rock your relationship. You’ve planned a future together and now that future is clouded with questions and concerns.
“No matter your relationship, Alzheimer’s will change it — and it will continue to change as time goes on,” said Heather Mulder, associate director of outreach programs with Banner Alzheimer’s Institute.
Alzheimer’s disease is a condition where plaques and tangles build up in the brain, so nerve cells can’t communicate. It’s the most common form of dementia. It affects memory, thinking, personality and behavior in ways that interfere with daily life and gets worse over time.
The emotional impact of an Alzheimer’s diagnosis may change as the disease gets worse. It can be emotionally draining for everyone involved. To cope, you may find that you react with denial, avoidance, withdrawal, depression or anxiety.
You may face these relationship turning points
Alzheimer’s disease can affect your relationship in lots of ways. In the earliest stages, it may be when you realize something is wrong. “It could be the moment of diagnosis,” Mulder said. “But often, it’s an instance — they make a mistake doing something they’ve never had trouble with in the past.”
For example, they leave the car running, use the incorrect tool or don’t recognize how their actions have affected someone or something. “It becomes undeniable. Something is wrong,” she said.
If you or your partner are diagnosed with Alzheimer’s, you may feel shock, disbelief, fear, sadness or anger. The person who is diagnosed may struggle with the loss of their independence and identity. Family members may grapple with grief and uncertainty.
“Early in the disease, the caregiving partner may do things like offer more reminders and keep track of the schedule. Over time, the needs will grow,” Mulder said.
As Alzheimer’s disease gets worse, your roles and responsibilities may shift. “You may find yourself taking care of things that the person always had taken care of, like cooking or handling the finances,” Mulder said. You might manage medications, coordinate medical appointments and help with daily tasks.
“It is more than the task, though. These responsibilities are changing the balance and dynamics of your relationship,” she said. Adjusting to new roles and expectations can be challenging.
“As the disease progresses to the moderate stage, the relationship can start to feel more one-sided,” Mulder said. “Whether the person was your confidant, partner, coach or shoulder, they will not be able to fulfill that role as they had. As their needs increase, so does the role of caregiver, which can feel like the relationship you had decreases.”
People with Alzheimer’s may also experience changes in mood, behavior and personality, which can strain the emotional connection between partners. Caregiving partners can struggle with anticipatory grief and loss as they watch their loved one decline.
“With each turning point, you suddenly see things differently. It probably wasn’t a dramatic moment, but one that caused a dramatic shift in how you see things,” Mulder said. “The good news is, by recognizing these perceptions you can work towards shifting them to a more positive light. By providing comfort, ensuring their body and soul are nourished and attending to their needs, you are not simply providing care. You are communicating your love.”
Strategies for couples facing Alzheimer’s
When your relationship is affected by Alzheimer’s disease, you’ll need to talk openly about your concerns, feelings and needs. Recent research suggests:
- Having open and intimate conversations
- Minimizing confrontation
- Avoiding bringing attention to symptoms
- Engaging in daily discussions and activities
- Communicating love and affection
Communication is the cornerstone of connection, understanding, empathy, trust and resilience. It can help to practice active listening by giving your partner your full attention, maintaining eye contact and avoiding interruptions. Acknowledge their feelings and express empathy and understanding.
Planning for the future is crucial. You’ll need to talk about care plans, future arrangements and end-of-life preferences. Be sensitive and make sure you both share your wishes and concerns.
Expect disagreements and try to focus on finding common ground rather than trying to win the argument. Remember that you are both navigating uncharted territory.
To maintain intimacy, you’ll need patience, empathy and creativity. Look for opportunities to find joy in shared moments and memories, such as listening to music, going for walks or simply spending time together. You may need to explore new ways of connecting and expressing affection. Try to focus on the present rather than dwelling on the uncertainties of the future.
As Alzheimer’s disease progresses, communication may become more challenging. You need to be flexible and adapt communication techniques to meet your partner’s changing needs. It can help to use simple language, nonverbal cues and visual aids. Be patient and supportive and remember that maintaining a connection with your partner is what’s important.
“Caregivers may reach a tipping point in their relationship where the role of caregiver has, in a sense, overtaken the other relationship,” Mulder said. “Over time, there’s the realization that the relationship is not what it used to be, and then, ideally, coming to a point where you view your acts of care as acts of love.”
To cope with these transitions, it can help to maintain routines, engage in enjoyable activities and practice self-care.
Connect with support and resources
It’s important to build a support network and connect with help. Surrounding yourself with friends, family members and health care professionals can provide emotional support and practical assistance. A support network can help you feel less isolated and better equipped to cope with the demands of caregiving.
Online or in-person support groups can be a great option. “No one understands better what you are going through than others walking the same path. Whether you simply listen or share, there is a lot of comfort to be found in knowing you are not alone,” Mulder said.
Your community may offer caregiver resources such as educational workshops, respite care services or informational materials. Ask your health care team what’s available.
You may also want to connect with mental health care so you can explore emotions, process grief and loss, and learn effective coping strategies. Individual counseling allows each partner to address their own needs and concerns, while couples counseling can strengthen communication skills, improve coping mechanisms and enhance support.
You can learn more about strategies that can help partners manage the changes that come with Alzheimer’s disease in the podcast The Relational Trajectory of Dementia, part of our Dementia Untangled series.
The bottom line
Navigating Alzheimer’s disease or dementia as a couple can be challenging. As the disease progresses, your relationship will change. Communication, understanding, education and support can help.
If you or your partner are showing possible signs of dementia or have been diagnosed with Alzheimer’s, you don’t have to go at it alone. Banner Health experts can help you overcome your challenges. Reach out and connect today.
