Dementia is not a typical part of aging.
In order for cognitive changes to constitute a dementia diagnosis, they must be severe enough to affect someone’s ability to live independently. And that is where caregivers step in.
But how to engage effectively with a loved one living with dementia, especially when behaviors can vary widely, and from day to day?
Writer Ashley Krollenbrock spoke with Dr. Shadi Gholizadeh, the Director of Memory Care at TheKey to understand better how dementia can present and how a caregiver can engage successfully. Here’s her story:
Dr. Gholizadeh is an expert, no question. With a Bachelors in Psychology at Stanford, a Masters in Social and Cultural Psychology at the London School of Economics, and a joint MPH and PhD from SDSU and UC San Diego, she has applied everything she has learned to her specialty in dementia care.
But when speaking with Dr. Gholizadeh, I was struck not only by her deep knowledge, but also by her compassion. Her approach to dementia care is holistic and deeply humanizing, as is her respect and care for families and clients. Her insights will resonate with caregivers who want to provide effective dementia care while honoring who their loved one is beyond their diagnosis.
In a far-ranging conversation, Dr. Gholizadeh and I discussed practical ways that caregivers can keep their loved ones fully engaged and supported. We also discussed the dementia cycle and big-picture ideas to keep in mind when developing a care plan.
People with dementia experience what is called anosognosia, which means they have a lack of insight into their condition. This means that “people with dementia believe that everything is okay and normal. This is different from denial,” Dr. Gholizadeh explains. When you correct someone with dementia they might just feel frustration. To provide effective care, she says, caregivers “want to enter into that person’s reality.”
It’s also important to realize that someone can be different from day to day, or even hour to hour. Take the time each day to understand your loved one’s beliefs and mindset, so you can tailor your care. One of Dr. Gholizadeh’s goals as Director of Memory Care is to teach caregivers to try different things, and, if they don’t work, to try again on a different day, at a different time of day, or in different settings.
Pro tip: try out the validation theory technique as a way to convey empathy for your loved one with dementia and improve quality of life for both you and them.
Early in our conversation, Dr. Gholizadeh shared a common refrain in dementia care: “If you’ve met one person with dementia, you’ve met one person with dementia.”
Because the truth is that everyone experiences dementia differently.
Dr. Gholizadeh explained that when it comes to care planning, “it is difficult to have a roadmap, because biology also meets social support, personality, and cultural background.” When someone is diagnosed with dementia, “for some there can be a significant grief cycle, while others can appear unbothered.”
This makes it important to focus on person-centered care. When we think about dementia, we often think about symptoms and challenging behaviors, such as wandering.
But there has been a recent shift to reframing challenging behaviors and using person-centered language. For example, “wandering” can be reframed as “exploring.”
“If we reframe our approach to a stance of curiosity,” Gholizadeh reminds us, “we can support wandering,” and go on walks instead of constantly saying no. Behavior is communication, so we need to ask ourselves, “What is the person saying?”
Dr. Gholizadeh’s Practical Steps for Caregivers
Know the Person
Style your care to be specific to the person you’re supporting, based on what they would appreciate, and where they are in their dementia journey. For example, you might want to frame a caregiver as a personal assistant or an activity director.
“It’s important to know a person’s background, what their values are, and what is important to them.” Ask yourself: What are the routines they’ve always had? If they’ve always cooked, incorporate that into their day, and realize that they may not want someone cooking for them. Adapt activities that are important to the person, instead of using a one-size-fits-all approach.
Encourage a Sense of Purpose
When you’re supporting someone with dementia, “don’t take away their sense of purpose. Choose activities that are in line with what a person values.” For example, if you play music, play songs that someone used to listen to when they were younger.
Dr. Gholizadeh says you want to “optimize the odds that a person will be open to dementia care,” and the best way to do this is to make activities meaningful. For example, “if someone used to be a teacher, frame the care so that the person is in a teacher role because that gives them a sense of purpose.” A former teacher might not want to play a language game, but may be excited to engage with the same activity if it involves teaching someone else.
Consider the Environment
Sometimes a person with dementia will respond well to an activity on one day, but not on another day. Instead of feeling discouraged, Dr. Gholizadeh encourages caregivers to ask themselves, “How are things different today, and how are they impacting behavior?”
Subtle things that we may not notice, such as background noises, temperature changes, and room brightness can have a profound impact on someone with dementia. If you learn to take notice of the environment, you’ll learn how to set your loved one up for success.
Focus on Engagement
Caregivers often feel pressured to organize formal activities for cognitive engagement. This isn’t always necessary. “You can make cooking or folding laundry into engagement.” Also, move away from rigid ideas about the correct way to do activities. “People with dementia are often tired of being told they’re wrong,” so they may withdraw if they feel pressured to engage in an activity that is difficult or tiring.
Create an environment that has enough rest time. You want to strike a balance between under- and overstimulation. Everybody needs time to relax. You don’t have to feel guilty if your loved one spends some time watching TV, especially if they have opportunities for more active engagement throughout the day.
Be Flexible and Curious
Dr. Gholizadeh shared one of the most important questions in dementia care: “How do we help a person’s world not feel so small?” As a caregiver, empower yourself to be curious and experiment. “Try new things, and you can apologize if they don’t work. If you don’t try, the person’s world will be smaller than it has to be.” Let go of your fear of failure.
Activities don’t always have to be formal, and can simply be incorporating someone in the day to day rhythms of life. Focus less on outcomes and preconceived goals. Some days will be better than others, and removing expectations will let you focus on the bigger picture.
Providing Care Later in the Dementia Cycle
I asked about how to support someone in the later stages of dementia. Dr. Gholizadeh shared that it’s still important to take a strengths-based approach. Talk to people, including their siblings and children, to learn about their values, background and interests. Ask others for clarification if something comes up that you don’t understand.
Dr. Gholizadeh encourages caregivers to “have realistic expectations for what a person can achieve and how they can connect.” Even if someone is unable to hold a conversation, they might communicate with you through eye contact, facial expressions, or touch. Keep an open mind when trying new things. For example, doll therapy is controversial and can feel undignified to some care providers. But Dr. Gholizadeh suggests that “if an adult is enjoying an activity, it is an adult activity.”
“Know there are pathways to connection always,” Dr. Gholizadeh reminds us. Familiar sounds, smells, textures, and sights are powerful ways to connect. Look for clues and non-verbal cues to see if what you’re doing is connecting.
It’s important to “let the person show you what is bringing them joy.” This is the key to meaningfully engaging with someone with dementia.
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