There is a kind of grief that does not have a name. It comes slowly, often before a formal diagnosis, in the moments when a person you have known all your life reaches the word that is no longer there. When they tell you the same story three times a day, or look at you with a disbelief that neither of you want to admit.
Photographer Julien Tromeur in Unsplash
Grief usually follows a loss. But with dementia, loss and presence coexist. Your person is still here. And yet, in a way that’s real and painful and hard to articulate, they’re slowly not here either. Psychologists call this unexplained loss, and it’s one of the least discussed aspects of what it means to love someone with dementia.
This article is not primarily about the person with the diagnosis. It’s about you.
Why the welfare of caregivers is not a luxury
Family caregivers for people with dementia are one of the most frequently discussed groups in the health and well-being conversation. The research on caregiver burnout is substantial, and its conclusions are clear: the intense physical, emotional, and cognitive demands of caring for a person with dementia place caregivers at significantly increased risk of depression, anxiety, chronic illness, social isolation, and decreased immune function.
A landmark study found that family caregivers of people with dementia reported higher levels of subjective well-being than other groups of caregivers. Another found that a caregiver’s health often declines along with the health of the person they are caring for, especially over the long term.
This is not a failure of love. This is a support failure.
The cultural expectation that family members, especially women, will shoulder the full burden of caregiving without adequate time, recognition or professional guidance is what harms people’s health. Focusing on your own well-being is not a distraction from caring for your loved one. This is, in a practical sense, what makes sustainable care possible.
What Caregiving Stress Really Feels Like
It is worth mentioning the experience clearly because it is stressful for the caregiver often not recognized for what it is, even by the people who live through it.
It may feel like this:
- Persistent low-level alertness that never completely goes away, even during sleep
- Emotional numbness alternates with excessive sadness or irritability
- Difficulty making decisions or concentrating on things unrelated to caregiving
- Loss of identity as roles outside of care quietly disappear
- Physical symptoms, including constant fatigue, headaches, indigestion and decreased immunity
- Guilt for feeling any of the above
This last point is important. The guilt that accompanies caregiver anxiety often prevents people from seeking help. If you love someone, he thinks you shouldn’t struggle so much. But this logic goes completely wrong. Struggle is not proof of insufficient love. This is the proof of the huge and mostly invisible amount of work that is done in difficult conditions.
Actions that really help
Well-being in a caregiving context is not the same as it is in other contexts. Prescribing yoga and journaling to someone who hasn’t slept properly in six months misses the point. What helps is generally more practical, more relational and more honest.
Rest that is real
Respite, that is, true, uninterrupted rest from caregiving responsibilities, is not a reward for managing things. This is a clinical necessity. Regular breaks from caregiving have been shown to lower cortisol levels, improve mood, and extend the time that family caregivers can provide care. The form of this is different for everyone, but it really requires putting it in, rather than constantly planning it.
Looking for a language to practice
Many caregivers describe a profound disconnection, not necessarily from people, but from anyone who truly understands what their daily reality is like. Support groups, whether in person or online, specifically for dementia caregivers have been shown to reduce depression and feelings of isolation more effectively than general social support. Dealing with people who don’t need to explain the situation is a relief in itself.
Allow yourself to be sad
The concept of uncertain loss is important here. You are grieving, and it is okay to be grieving, even though the person you are grieving is still present. Naming this, whether in therapy, talking to a confidant, or internally, can reduce some of the confusion and shame that comes with grieving someone who is still alive.
Grief has no clean form. It comes in parts. A familiar gesture. A special phrase. Old photo. It’s not weakness to make room for those moments instead of pushing them away. This is how the nervous system processes what the mind cannot always retain.
Know when to seek professional support
There is a big difference between asking for help and giving up. Professional research care for family members is one of the most constructive things a family can do for both the person with the diagnosis and the well-being of anyone who cares for them. Whether that means respite care, arranging ongoing care, or simply a professional assessment of what level of support is really needed, it’s a decision based on honesty, not frustration.
The body keeps score
Chronic caregiver stress does not go unnoticed. It is located in the body. Elevated cortisol over the long term affects everything from cardiovascular health to cognitive function to sleep architecture. Caregivers who neglect their physical health often report that they do not realize how worn out they are until they are forced to stop, overcome by illness or crisis.
The basics are important here:
- sleep sufficiently and consistently as much as possible
- Movement, even short steps, significantly reduces cortisol and improves mood
- Food that does not live completely in comfort
- The medical appointment you’ve been quietly putting off
- Contact with nature, which studies consistently show, reduces physiological stress indicators
None of this is revolutionary. But when someone else’s needs are more important than your own, it’s easy to leave them out entirely.
You deserve to be cared for too
A conversation about dementia wellbeing needs to involve two people at once: the person with the diagnosis and the person next to them who loves and works and grieves.
Caring for someone with dementia is one of the best things a person can do. That it is often done quietly, without recognition and without adequate support does not make it any less so.
Your health is not the explanation of this story. It is part of the story. And it deserves the same kindness, attention, and honesty that you would willingly give to anyone else.
- About the Author
- Latest news
Our editorial team are writers and experts in their field. Their views and opinions are not necessarily those of Wellbeing Magazine. If you are under medical supervision, talk to your doctor or therapist before following the advice and recommendations in this article.
