A Conversation with the Co-Founder of Living with Dementia, Sheila Ohstrom
At Daughter for Hire, we believe that some of the most valuable lessons in caregiving come from those who have lived it. In this quarter’s feature, we sat down with Sheila Ohstrom, one of the founders of Living with Dementia. Sheila is an advocate, former home care business owner, and caregiver whose journey began at home with her own mother.
“This started with my mom.”
The inspiration behind Living with Dementia began with a personal journey. After her mother was diagnosed with vascular dementia, Sheila experienced firsthand the challenges, confusion and lack of accessible resources that many families face. Having previously owned and operated a senior home care company, she brought years of hands on caregiving experience into this new mission. After selling her company in 2024, she shifted her full focus to nonprofit work, creating educational opportunities and support systems for caregivers. A major milestone was launching a large-scale dementia conference in 2023, designed to bridge the gap between families and the resources they desperately need. Her mission became clear: to make education and resources more accessible so families do not feel alone.
Caregivers are in survival mode
As our conversation shifted to the current state of caregiving, one theme stood out above all others: exhaustion.
“Caregivers are burned out,” she said plainly.
Many are operating in crisis mode and focused only on getting through each day. Without enough help or support, they often neglect their own well-being, which only compounds the challenge over time. It’s a cycle she sees often and one she hopes to change by encouraging caregivers to seek help sooner, not later.
Understanding what’s really changing
One of the most eye-opening parts of our conversation was the reminder that dementia affects far more than memory and often in ways families don’t expect. As Sheila explained, “People think it’s just forgetting, but one of the earliest changes is actually how the brain processes vision.”
In the early stages, a person’s visual field begins to narrow, like looking through a scuba mask. They can only take in a limited amount of information at once, which helps explain why falls and missteps become more common. It’s not just physical decline; it’s that the brain can no longer fully interpret what the eyes are seeing. As dementia progresses into the mid-stage, vision becomes even more restricted, often described as binocular. The person can only process what is directly in front of them, with little awareness of what’s above, below, or around them. This is why they may not notice things like dirt on their clothes or changes in their environment. It’s not neglect, it’s a neurological limitation.
In the later stages, vision can become even more impaired, sometimes described as ocular, where only small, fragmented pieces of visual information are processed. When this is combined with common age-related conditions like macular degeneration or other forms of vision loss, the result is often increased confusion, disorientation, and anxiety.
Understanding this connection between vision and dementia is critical. It shifts the perspective from “they aren’t paying attention” to “their brain cannot process what they’re seeing.” That awareness allows caregivers to better adapt to the environment, reduce risks, and respond with greater empathy and intention.
When it’s more than “normal aging”
Many families struggle with knowing when something is truly wrong. Her advice is clear: dementia is not a normal part of aging. “Forgetting something and then being able to retrace your steps, that’s one thing,” she explained. “But if someone can’t retrace, or they’re confused about where they are, that’s different.” She shared common examples she’s seen:
- • Getting lost on familiar routes
- • Misusing everyday objects (e.g., using a remote as a phone)
- • Struggling with tasks they once managed easily, like paying bills
- • Not recognizing when something is out of place or unsafe
Often, these changes are first noticed by family members who don’t see the individual daily, such as adult children visiting during holidays. Her recommendation: trust those observations and pursue a proper diagnosis early.
“Don’t Correct Them, Join Them”
When it comes to communication, her guidance challenges what many people instinctively want to do.
“If someone tells you the sky is purple,” she said, “you don’t correct them. Instead, she encourages caregivers to enter the person’s reality. “You might say, ‘It really is a beautiful color today,’ and then gently redirect.”
The same applies to hallucinations or false memories. Correcting someone with dementia can create frustration, embarrassment, or even anger. “You can’t rationalize with a broken brain,” she explained. “But you can meet them where they are.”
This simple shift from correcting to connecting can dramatically reduce agitation, preserve dignity, and foster a calmer, more supportive interaction.
The environment matters more than you think.
Another powerful takeaway from our conversation was that the physical environment plays a major role in how someone with dementia experiences their day.
She shared practical, often overlooked strategies:
- • Establishing consistent routines
- • Using calming colors like pastel blues, pinks, and yellows as bedroom paint
- • Avoiding dark rugs, which may appear as holes
- • Using red plates to increase food intake
- • Adding visual cues, like colored toilet seats, as the disease progresses.
“These aren’t big changes,” she said, “but they make a big difference.”
The role of observation
Caregivers are more than helpers; they are critical observers. Because dementia progresses gradually, changes can be difficult to recognize in real time. That’s why Sheila strongly encourages keeping a journal.
“Write things down,” she advised. “Specific examples matter.”
This becomes especially important when communicating with healthcare providers, who rely on detailed observations to guide diagnosis and care decisions.
When someone experiences a heart issue, they’re typically referred to a cardiologist; for kidney concerns, a urologist. Memory changes, however, are not always evaluated with the same level of specialization or urgency, which can sometimes delay deeper assessment.
That’s why self advocacy and documentation is so important for both individuals and their families. If something doesn’t feel quite right, it’s worth asking for a memory assessment, exploring additional testing, or requesting a referral to a neurologist or geriatric specialist. Taking these proactive steps can lead to earlier, more accurate understanding and better planning for the future.
She also noted that family dynamics can complicate things, particularly when some members don’t see the day-to-day reality. Loved ones who aren’t present day-to-day may genuinely believe everything is “fine,” attributing changes to normal aging. Over the phone, a person living with dementia can often mask symptoms through casual conversation and social habits. Even between partners, it’s common for one to compensate for the other, quietly covering up challenges without ever saying a word. What’s happening in real life can look very different from what others perceive at a distance.
Planning early makes all the difference
One of the most important yet often delayed steps in the journey is planning ahead. She emphasized how critical it is to have key documents and decisions in place early, while the individual is still able to fully participate in the process. These include a health care proxy, MOLST forms, and broader legal and financial planning. A MOLST (Medical Orders for Life Sustaining Treatment) form is a way for someone to clearly share their wishes for medical care, ensuring their voice is heard even if they’re unable to speak for themselves. It is completed with a healthcare provider and helps ensure that care decisions reflect what matters most to the individual.
“If you wait too long,” she explained, “you may lose the ability to make those decisions together.”
Having these conversations early not only ensures that wishes are clearly understood and respected, but also helps reduce confusion, stress, and potential conflict down the road. It creates a sense of control and dignity for the individual, while giving families a clearer path forward.
Planning ahead can also open the door to important discussions about care preferences, living arrangements, and future support needs. While these conversations can feel difficult, approaching them early before a crisis allows families to make thoughtful, informed decisions rather than reactive ones.
Caregiving isn’t intuitive
“Caregiving is not intuitive, especially with dementia.”
Many families navigate this journey through trial and error, often with the best intentions but without the tools or knowledge to respond in ways that are most effective. For example, correcting a loved one or reminding them that a spouse has passed away may feel honest and appropriate, but for someone with dementia, that loss can feel new each time, triggering repeated grief, confusion and distress.
Instead, she encourages caregivers to “go with the flow”, a skill that takes time, and practice. This might mean meeting the person where they are in their reality, redirecting the conversation, or responding in a way that preserves comfort and dignity. While this approach can feel unnatural at first, it is a skill that develops over time and can significantly reduce anxiety, prevent escalation, and create more meaningful, supportive interactions.
Hope through awareness and change
Despite the challenges, she remains hopeful.
There is growing awareness around dementia, and more caregivers are beginning to accept support, something that hasn’t always been the case. Families are starting to realize they don’t have to navigate this journey alone, and that shift is making a meaningful difference. She also emphasized that while dementia can feel unpredictable, there is increasing evidence that brain health is not entirely out of our control.
“People often think there’s nothing they can do,” she shared. “But that’s not true.”
Emerging research continues to highlight the connection between lifestyle and brain health. While these habits may not prevent dementia entirely, they can play a significant role in supporting cognitive function and overall well-being:
- • Social engagement: Staying connected with others helps stimulate the brain and reduce isolation, which is a known risk factor for cognitive decline.
- • Nutrition: Diets rich in whole foods, especially those supporting heart health, can also benefit the brain.
- • Exercise: Regular physical activity improves blood flow to the brain and supports overall neurological health.
- • Cognitive stimulation: Activities that challenge the brain, such as reading, puzzles, or learning new skills—help maintain mental sharpness.
- • Heart health: Managing blood pressure, cholesterol, and other cardiovascular factors is critical, as heart health and brain health are closely linked.
She noted that research studies, such as the U.S. POINTER study, are continuing to reinforce these connections offering both guidance and hope for the future.
“These things matter,” she said. “And we’re learning more every day.”
Caregivers need care too
As our conversation came to a close, she shared one final, powerful reminder: Caregivers cannot pour from an empty cup. For years, caregiving has been marked by quiet endurance, people taking on immense responsibility without asking for support. But growing awareness is beginning to change that narrative. Caregivers are speaking up, leaning on community, and recognizing that they don’t have to do this alone.
The physical and emotional toll of caregiving is significant and too often overlooked. Supporting caregivers is not optional; it’s essential, and that, ultimately, is the heart of her work.
Looking ahead
Living with Dementia will host an upcoming conference on October 29th in Syracuse, offering education and training for both family and professional caregivers. Please sign up by visiting their website.