55 million people worldwide are living with Alzheimer's disease and other dementias, according to the Alzheimer’s Organization. Dementia is a diagnosis that carries immense weight — not just for the individual but for their entire support system. While it can feel overwhelming, understanding the condition, preparing for its progression, and seeking the right support can make a significant difference in the journey ahead.
Watermark recently hosted a seminar on relationships and how they change with dementia. The discussion covered disease progression, available resources, emotional impacts on caregivers and loved ones, and the differences between memory care and assisted living. The event provided attendees with valuable insights and practical strategies for navigating the challenges of dementia caregiving. Discover what was learned in this helpful seminar below.
Understanding Dementia: Causes and Diagnosis
Dementia is not a single disease but a syndrome affecting memory, cognition, and behavior. Various factors, including age, genetics, cardiovascular health, and environmental exposures, contribute to its onset. Conditions like Alzheimer’s disease, vascular dementia, and Lewy body dementia each have distinct characteristics but share common challenges.
Early and accurate diagnosis is extremely important, and the need goes beyond outdated cognitive assessments. Medical advancements allow for earlier detection, leading to increased diagnoses. While primary care physicians often administer more basic cognitive tests, a neurologist typically performs more advanced tests such as the Mini-Mental Status Examination (MMSE) and brain scans like MRIs or CAT scans. These assessments help determine the severity and type of dementia, guiding the best course of care.
The Emotional Journey of Dementia Care
Caring for someone with dementia is an evolving process that reshapes relationships and emotions. Many caregivers experience the five stages of grief — denial, anger, bargaining, depression, and acceptance — as they watch their loved one change. They may also experience frustration, resentment, loneliness, rejection, insecurity, fear, guilt, and exhaustion.
It’s important to acknowledge emotions rather than suppress them. Seeking support groups, therapy, educational workshops, or caregiver groups can help manage these emotions and prevent burnout.
Dementia can affect emotional regulation and expression in several ways, often leading to noticeable shifts in the emotional state of your loved one with dementia. Some of these changes may include:
- Happy. Some individuals remain content despite confusion.
- Emotional. Others experience increased sadness or unexplained tears due to hormonal imbalances.
- Aggressive or Irritable. Individuals may have outbursts of frustration, irritability, or aggression.
Recognizing these variations allows caregivers to respond with patience and empathy, ensuring the individual feels seen and supported.
Adapting to Changing Relationships
As dementia progresses, relationships naturally shift. Spouses may transition into caregiving roles, children may find themselves supporting parents, and social interactions may change.
It is important to set realistic expectations. Loved ones may no longer recognize familiar faces or struggle with communication. While these changes are difficult, maintaining connection through simple joys — listening to music, sharing stories, or even simply holding hands — can offer comfort.
Caregivers should ask themselves three key questions:
- What does my loved one need from me? Providing emotional, physical, and intellectual support in ways that align with their current abilities is crucial.
- How can I adapt to their changing needs? Adjusting expectations and approaches ensures they continue to feel valued.
- Am I taking care of myself? Seeking support, taking breaks, and prioritizing self-care are essential for long-term caregiving.
The Importance of Education and Support in Dementia Care
Navigating dementia is not a solo journey — it takes a village. The seminar reinforced that caregivers should never hesitate to ask for help. Organizations like the Alzheimer’s Association and local aging councils provide valuable resources for education, caregiver training, and support groups. Staying informed and connected can ease the caregiving process.
There are many differences between assisted living and memory care. Assisted living is for individuals who need help with daily activities but do not have significant cognitive impairments. Since memory care is specifically designed for individuals with Alzheimer's disease, dementia, or other memory-related conditions, memory care communities often have secured environments to prevent wandering, structured routines, and associates trained in dementia care. Remember, moving a loved one to memory care does not mean that you are “giving up” but rather prioritizing safety, support, and quality of life.
For those considering memory care communities, assessments help determine the right level of support. While some campuses require a formal diagnosis, others evaluate cognitive abilities to ensure appropriate placement. Understanding these options early can make transitions smoother when additional care becomes necessary.
Finding Meaning in the Journey as a Dementia Caregiver
Despite its challenges, dementia caregiving is also filled with moments of beauty. A familiar song can spark joy, a shared joke can lighten the mood, and fleeting moments of clarity may remind us that love remains even as memory fades. Accepting the journey for what it is — one of resilience, adaptation, and deep compassion — allows caregivers and loved ones to find peace amid the changes.
If you or someone you love is facing dementia, remember that you are not alone. Education, preparation, and a strong support system can make all the difference in navigating this path with dignity, patience, and love.
Books for Caregivers
Forget Me Not by Debra Kostiw
The Dementia Caregiver’s Survival Guide by Janet G. Cruz
The 36-Hour Day by Nancy L. Mace, MA & Peter V. Rabins, MD, MPH
Living in the Moment by Elizabeth Landsverk, MD & Heather Millar
Understanding the Changing Brain: A Positive Approach to Dementia Care by Teepa Snow
A heartfelt thank you to Aegis for their insightful presentation, which served as the foundation for this blog post. Your expertise and knowledge are greatly appreciated!
As part of Watermark’s ongoing commitment to dementia education, future presentations will cover dementia communication techniques and caregiver experiences.
