Author:
Kim Warchol, OTR/L, Founder of Dementia Care Specialists
There is no question, dementia is a very challenging disease. What makes it so challenging is the broad reaching, cumulative effect of the cognitive changes (e.g., decline in memory, thinking, reasoning, problem solving, and learning). The decline of these cognitive abilities impacts the person with the condition in many ways including:
- Their ability to independently do life activities such as managing finances, driving, cooking, and taking medications (as prescribed). As the disease progresses, even doing the basics such as dressing, toileting, and bathing independently is no longer possible. These care needs create a great burden on loved ones as they try to step in and assist.
- Their ability to communicate declines rendering “normal” conversation difficult and unreliable.
- Their personality characteristics may change, appearing as if the person you knew is no longer there.
- Their ability to regulate their emotions and to understand what is happening around them (e.g., the sights and sounds) both diminish. This creates a variety of stressful situations that may lead to escalating “distress behaviors” like anxiety, agitation, resistance, paranoia, suspicion, and aggression.
As said, when all these symptoms combine this becomes an overwhelming situation for everyone involved. Not only is it immensely stressful but it can also lead to despair for both the person with dementia and for their loved ones.
About Dementia Grief
It is not unusual for someone to live several years with dementia. And over this period, they are declining through the stages, losing abilities as stated above. But loss is not only experienced by people with dementia. Loss is also felt by their families and friends as they try to cope with the changes.
In my experience, one of the most difficult and insidious micro situations occurring behind the scenes is, loved ones are trying to cope with the loss of someone who is still alive. Sadly, this perplexing, painful scenario is often hidden or deprioritized by the holder. Oftentimes, we, as healthcare professionals, are the catalyst for driving gentle understanding of the abilities that remain.
As independence and personality change, and the relationship and roles previously shared are slowly eroding, loved ones may find themselves grieving the person and the life they once knew. This process of grieving occurs prior to death and is referred to as “dementia grief.”
This can be an especially difficult and complex emotional situation because the person has not passed, but all sense of normality has. To complicate further, grieving over someone who is still alive can create feelings of guilt. And profound grief can lead to the loved one becoming depressed, making the dementia journey so much more overwhelming.
If you are wrestling with the feelings of having lost your loved one with dementia, and yet they still sit beside you, what can you do?
Understanding these feelings as normal is vital. It is normal to miss the person and the relationship that you knew and enjoyed, and it is natural to mourn when you feel they (and the life you shared) are gone.
Most importantly, you must get this feeling out of the shadows. Hiding it leaves you emotionally and physically vulnerable and may even lead to destructive feelings such as shame. Conversely, talking about it with a confidant can help the feeling to dissolve and the pain release.
Don’t try to go it alone. Talking to a friend or a mental health professional can help and should minimize any harmful negative self-talk.
To best cope, you must accept and this often takes time requiring professional or support group assistance. Once at the acceptance phase of grief, the need to hark back to what used to be is lessened, in favor of seeing and enjoying the person where they are in the moment, and at each stage of their dementia journey. Again, be kind to yourself. This is a difficult process.
How can a dementia capable workforce help families and friends deal with dementia grief and cope with loss?
A dementia capable workforce is one that possesses the heart, patience, understanding, and skills to help the person living with dementia, their loved ones and care partners to thrive. A dementia capable professional can help everyone to “cope” and to deal successfully with this demanding and emotionally draining life situation.
Dementia capable care providers should support loved ones in the following ways:
- Each visit, take a moment to ask how loved ones are doing and listen with a compassionate heart. Offer emotional comfort.
- Encourage participation in support groups. Offer guidance on how and where to find appropriate support groups (or professionals like psychologists) who can help.
- Teach how to have a satisfying relationship, in this moment. This requires acceptance of what is and the ability to meet the person with dementia, where they are on their journey. Dementia capable carers can:
- Teach the important perspective shift of “we cannot change the person living with dementia” but (with support and strength), loved ones can create new moments of joy.
- Teach how to adapt meaningful activities to match the stage of dementia.
- Teach how to apply person-centered care to ensure someone with dementia is always a person-first and not reduced to a diagnosis.
- Encourage loved ones to take some time for themselves, helping them to know this is not a selfish act, but a necessary one to help all.
- Respite time and time spent recharging is healing and helps the loved one maintain a sense of normality.
- To accomplish this, the dementia capable professional or team can provide guidance in the many ways the person living with dementia can be safely, and meaningfully occupied, while the loved one captures routine, necessary time away. Companion care in the home or adult day services, are just two great options.
Working together we can get dementia grief out of the shadows.
A dementia capable workforce understands their job responsibilities include serving both the person with dementia AND their loved one(s), offering emotional support as families often experience dementia grief. This assistance is vital to help family units survive and even thrive within the dementia experience.
Dementia strips away so much. This specialized workforce helps combat the reality of the losses by focusing on what remains, adapting, and offering an enormous amount of emotional support to help families walk the dementia journey free of guilt or shame. Wrapped in supportive arms encourages open conversations so we tackle dementia grief together.
With this comprehensive dementia care approach, delivered with skill and grace, loved ones are allowed to feel permission to mourn the person they once knew - while also discovering ways to empower, connect, and build a meaningful relationship in the here and now.
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Originally published July 6, 2026.
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