I'm a Family Caregiver to Someone with Dementia: What Should I Know

Posted May 20, 2015

Grief, guilt, frustration, hopelessness, or even resentment.

These are just a few of the emotions that come alongside the stresses of helping a loved one with dementia. It might be helping a loved one handle personal care or daily household management, emotional support, companionship, or helping with medical care: no matter the set of tasks, it’s a lot for anyone to take on.

Here’s what no one ever told you as a caregiver to someone with dementia.

1. Separate the Practical from the Emotional.

The most important thing a caregiver who is supporting someone with dementia can realize is that there is a practical and an emotional side to what they are tasked with each day. Both sides need consideration.

One practical step we can take is to be as educated and informed as we can be.

“Caregivers really need to learn the techniques for managing challenging behaviors,” says Dr. Amy D’Aprix, PhD, MSW, CSA. Dr. D’Aprix—who is well known simply as Dr. Amy—is an aging, retirement, and caregiving expert, facilitator, international speaker, and coach. She is also co-founder of the Essential Conversations Project.

Because dementia is a progressive disease, caregivers do need to plan, but it is helpful to realize that the health status and certain challenges will continually be changing. There is no way to create one long-term plan for all the medical and health-related, financial, and other decisions that will need to be made. “Part of the ‘practical’ side is that [adaptive process that requires us to] keep learning,” explains Dr. Amy. In turn, this approach will help us manage these changes we see in our loved one, with confidence.

Resources and education online help caregivers find greater control and can help you combat feelings of being overwhelmed. Practical resources Dr. Amy recommends include information on Home Instead’s website and the book Confidence to Care: A Resource for Family Caregivers Providing Alzheimer’s Disease or Other Dementias Care at Home by by Molly Carpenter. Dr. Amy also recommends A Dignified Life: The Best Friends Approach to Alzheimer’s Care, A Guide for Family Caregivers by Virginia Bell and David Troxel.

Action step: sit down and figure out what you need to know, or what kind of resources you can obtain, that can help you as a caregiver.

2. Make Decisions Based on the Notion of Sustainability.

Dr. Amy says how the goal for many caregivers is helping your loved one extend their quality of life, and that means acting in a way that is most sustainable for your own self-care. But sometimes we lack the ability to assess that prioritization or evaluate the importance of our self-care.

To help manage this emotional (and sometimes physicial) side of caregiving, people need to recognize they can’t go at it alone, says Dr. Amy.

“Caregivers need support. This is not a solo activity,” she says.

Having the help of additional family members or friends may not always be an option. In that scenario—and even with the help of others in the family—it is best to hire help or seek out a volunteer organization.

One of the most challenging things caregivers will experience is the trade-off in taking care of themselves and taking care of their families and their aging loved ones. “You don’t have to go away on a two week vacation, but you might build in some moments or 10 minute breaks for yourself during the day,” explains Dr. Amy.

Action step: See how, as a caregiver, you are coping with stress each day. Is that the best way to cope with stress in the long-term? Write down how you plan to attend to you own heath this week.

3. Default to Speaking Early, And Often.

Difficult conversations are almost inevitable when taking care of someone with dementia. Dr. Amy says: “talk early and often.”

Financial or medical conversations are essential ones, but they are by no means easy. Having a loved one talk openly about issues related to dementia (or any chronic disease) can also be taxing.

Dr. Amy has repeatedly seen how it’s easier for all involved to come together as best they can, and discuss actions needed or plans required as soon as possible.

“If there is a diagnosis, that is great trigger for a conversation,” says Dr. Amy. The transition to bringing up the topic at hand is made easier, and usually after a diagnosis, people will be engaged. It also gives a reason for multiple decision makers to be able to come together for the conversation.

The alternative is that people wait and wait for the awkward or uncomfortable conversations. People can wait forever for a “good day” for the conversations to occur. “People have never had those conversations and five years down the road, people are angry,” Dr. Amy says. Or worse yet, the conversations simply never happen.

During these conversations, it’s crucial for us to ask the person being cared for: what does quality of life look like for you?

Talking health and longevity in this way isn’t always easy, but this approach—when done early—helps avoid unnecessary conflict. It also hows the utmost respect possible, and reflects the dignity you want your loved one to maintain. You’ll uncover blind spots you were unaware of when it comes to their wants, emotions, and what they believe about their own health status. Last, it ensures your loved one is being heard—a crucial part in better care, and their overall quality of life.

Action step: make a list of the conversations you’ve been avoiding or that you should be having. From record keeping to legal matters to health decision-making/safety concerns, there is likely one conversation or more you can schedule.

Dr. Amy D’Aprix, PhD, MSW, CSA. Dr. D’Aprix—who is well known simply as Dr. Amy—is an aging, retirement, and caregiving expert, facilitator, global speaker, and coach. She is co-founder of the Essential Conversations Project aimed at helping families through a variety of life transitions. With a passion for helping families, Dr. Amy has created a new way for older adults and their adult children to develop workable plans together before a crisis occurs. Find key resources, FAQs, and more about family support with life transitions at the Essential Conversations Project’s website.