An Exploration of Dementia and Grief From Both a Caregiver and Patient Perspective
Dementia grief comes in stages, often bringing about heavy and lonely feelings — for many, a rollercoaster ride of emotions.
Witnessing life when thoughts and recognition are being eliminated from a patient’s memories is difficult for the caregiver and the person with dementia.
It can be draining and exhausting. However, acquiring knowledge and finding support can help everyone involved.
Accepting that grief accompanies you throughout the phases of dementia can help you deal with it. Coping with dementia can feel unbearable for anyone in the situation, but with a clear understanding of the grief you may be feeling and knowledge about how to assist your loved one(s), it may feel more manageable.
Continue reading to learn more about dementia and the grief you (and your loved one) may be suffering from.
Table of Contents
Grief and Dementia Part I: Loved Ones
When dealing with dementia, it can help to understand that you are not alone. According to Alzheimer’s Disease International, there were more than 55 million people living with dementia worldwide in 2020.
And this number is only expected to rise. It is estimated that in the next eight years this number will increase to 78 million.
For those dealing with dementia, grief disrupts life for not only the patient but also for their friends and family. Grief is the process of how one reacts to a loss. Although it unfolds differently for everyone – it is a highly personal progression – grief’s effects range from feelings of shock to despair and helplessness.
Anticipatory grief is usually the first form of grief that arises; this term is also referred to as preparatory grief or anticipatory loss.
Life is different when a loved one reaches a point where they are confused, use poor judgment, have memory loss, or can’t express themselves. Seeing a loved one’s well-being decline is emotional.
You can start mourning someone before the person dies. You mourn what you no longer have and grieve the expectations you had, not just the person.
There will be no more adventurous vacations, no more dinners out at your favorite restaurants, and no more shopping trips to the local grocery store. No matter how ordinary the task is, once the opportunity to do it is gone, you realize how important it is to appreciate every moment.
When grieving your loved one, a therapist can help you work through the pain associated with losing what you expected life to be like before dementia.
Loss and grief are recurring themes that loved ones and caregivers deal with as dementia progresses. It differs from the grief associated with death because there is no closure in ambiguous loss.
It is tough when grieving a parent with dementia as the roles are reversed, and often the children become the caregivers.
Ambiguous loss just lingers. It is not something many feel like they can heal from while a loved one is still living with dementia. Although it may feel unresolvable, once you learn how to cope with it, it can get easier.
Based on your relationship with the patient, you may grieve:
- Future dreams
- Independence and freedom
- Shared responsibilities
- Your past lifestyle
- Quality time together
But there are ways to move through grief.
Consider doing the following to start living more positively while navigating dementia and grief.
- Connect with friends and family for support. Seek additional support when needed. There are many caregiver support groups.
- Take care of yourself. Don’t neglect your needs.
- Reflect on what is going on in not only your life but also in the life of your loved one. Acknowledge your feelings and feel confident expressing and sharing with others.
- Access your creativity to express grief. Painting, drawing, and photography are popular mediums.
- Normalize that life has changed, and things are different. Accepting these changes will bring more love and peace into your space.
How Loved Ones May Experience the Stages of Grief After a Dementia Diagnosis
Let’s look at the five common experiences that make up the stages of grief.
Numbness and shock are often felt in this denial stage. Many feelings are suppressed because everything is just too overwhelming.
When in denial, you may:
- Hope the person is not really ill.
- Ignore problematic behavior.
- Think the situation will change.
Denial is often expressed as avoidance, procrastination, and forgetting.
Anger presents itself in many ways. You may be feeling frustration, impatience, embarrassment, or rage. You may even lash out at people with no direct relationship to the root of the anger.
Dealing with anger can look like:
- Resentment toward the situation and the demands it entails.
- A feeling of abandonment.
- Feeling frustrated with your loved one.
Bargaining can bring on feelings of guilt, shame, blame, and anxiety. You may be trying to replace the hopelessness of the situation, giving you another option from reality. Bargaining is a pure focus on the past.
Bargaining may sound like asking for:
- Another chance and promising not to do something again next time.
- One more day like life was before the diagnosis.
- Things to go back to the way they used to be.
Depression focuses on the present moment; grief is strongly felt and a vital part of the healing process.
Feelings of depression can include the following:
When depressed, you may feel a decline in energy and no desire to be social, leading to a withdrawal from activities. You may cry a lot and notice changes in your sleeping and eating patterns.
Life shifts once you come to terms with your grief. Accepting a situation is very different from agreeing to what is happening. It isn’t moving on or getting over something. It is being able to live again, creating new relationships, and sharing love with those in your life.
When you accept what is, you:
- Live in the now.
- Understand the process of grief and its role in your life.
- Appreciate the growth that comes from grief.
Suggestions for Coping With Your Grief as a Loved One
Caregivers and loved ones of those with dementia have a lot to handle. Denying your feelings can keep you stuck and helpless. Shift into a new mindset to live in more peace and comfort from knowing you are doing the best you can.
Figure out the best way to process your grief. Remember that everyone is different, and your experience is only yours.
Feel your feelings, even the painful ones. To be able to feel, take a moment to pinpoint which exact feelings you have. Try using this list and write down every feeling dementia brings up for you. This activity can help you accept what is and release the feelings you no longer desire.
Reflect on the idea that feelings are not good or bad; instead, they are associated with either met or unmet needs. Don’t rush through the process by trying to dismiss feelings when your needs are unmet.
Here are some other tips for coping with grief.
- Write out your thoughts in a journal.
- Talk with trusted friends, family members, or professionals. When you share your grief, you can release some of it, lessening its hold on you.
- Use your tears to cleanse and relieve stress and sadness.
- Open to receiving help from others. Learn to ask for help.
If it is time for you to start caring for someone with memory loss, learn more here. You are not alone.
Grief and Dementia Part II: Dementia Patients Grieving Their Future
Here, we will share the experiences the patient may have after a diagnosis. These feelings are typically reported during the early stages of cognitive decline.
As time goes on, people with dementia may not even know what’s happening, making life even more confusing and scary.
For more in-depth information about the seven stages of dementia, click here.
After a diagnosis, patients may grieve for things that haven’t happened that they know they’ll miss, such as future weddings, graduations, and babies being born. Patients know that life will be different and often feel like they are losing control.
Dementia takes away a person’s independence and ability to do everyday tasks.
Anticipatory grief has the following stages.
- Shock for what the patient is losing.
- Denying that dementia is a reality.
- Accepting that life will be different.
Anxiety and Depression
Anticipatory grief generally leads to anxiety and depression.
HelpGuide, your trusted nonprofit guide to mental health and wellness, urges patients not to ignore their symptoms.
“Symptoms such as withdrawal, agitation, feelings of worthlessness, and changes in your sleeping patterns can make dementia symptoms worse, though, and limit your independence.”
Here are some self-care tips that can help patients adapt to the changes in their health.
- Be aware of anxious thoughts and learn to look at situations differently.
- Talk about fears and other emotions to work through feelings; these conversations can improve one’s mental well-being.
- Eat well, exercise regularly, and prioritize rest and sleep to decrease anxiety and depression symptoms.
Suggestions for Coping With Your Grief After a Dementia Diagnosis
It is normal to have many feelings pop up once you get a diagnosis.
You are aware your life is about to change — your memory and personality will be affected.
Feelings of anger, shock, and fear arise.
Depression or anxiety may develop.
Give yourself the time you need to grieve and adjust. There is no ‘right’ or ‘wrong’ way to act.
Here are some tips that may help you when dealing with grief.
- Be kind to yourself.
- Focus on your identity and who you were before your diagnosis.
- Feel your feelings.
- Educate yourself about dementia and grief.
- Update your living space to remove hazards.
- Develop new daily routines.
- Write reminders for yourself when needed.
As a caregiver and loved one, read more about how to communicate with the person dealing with memory loss here.
Grief and Dementia Part III: Processing Loss and Grief as a Person With Dementia
Once dementia sets in, it may be complicated for a patient to understand that a loss has been experienced. Additionally, they may not even know how to grieve.
What Does Grief Look Like for a Person With Dementia?
How patients with dementia cope with loss ranges drastically.
Factors that affect their ability to deal with loss might include:
- Their stage of dementia
- Their relationship with the deceased
- How often they had spoken with or seen the deceased
- Their personal way of handling grief
It is common for dementia patients to become restless and agitated when grieving — they may struggle to know who you’re referring to or even accepting that a person has passed away.
Informing Someone With Dementia About a Loss
When you must inform someone with dementia about a loss, the process can be challenging as they most likely won’t even be able to accept the loss as a reality.
So, how can you go about informing someone with dementia about a death, while still being considerate and compassionate?
Try the following:
- Tell the patient as soon as possible, so they don’t have the chance to sense that something is different.
- Use short, simple sentences and stick to the facts. Give as few details for less confusion.
- Use the word “died” instead of other phrases like “passed away” or sharing that someone is now “at peace”.
- Support the patient with physical touch. Hugs and holding hands go a long way when comforting someone.
- Have the conversation when the patient is well rested and has already eaten. Wait until they have all of their needs met.
Helping Someone With Dementia Accept a Loss
Once a patient experiences a loss, there are ways to help them accept the reality that someone they know or love has passed.
When a person dies, their memory lives on forever.
- Speak about the deceased in the past tense to reiterate that the person is no longer alive.
Sharing your sadness can also help you connect to the patient.
- Look at old pictures and talk about what you miss about the person and your favorite memories of them.
Follow the patient’s lead.
- If they don’t want to reminisce, move forward with other topics.
Over time, the patient may bring up the deceased. If this becomes upsetting, show empathy, and let the patient know they are heard and seen.
Senior Services of America: Offering Compassionate Memory Care
Senior Services of America communities create compassionate solutions for the challenges of aging.
Our Memory Care Communities help residents and family members go through some of the most difficult life challenges. We can relieve some of your stress by providing a safe place for your loved one with dementia. Find your nearest community to speak to an advisor.