According to the World Health Organization, 55 million people live with dementia worldwide, with 10 million new diagnoses each year. Dementia is an umbrella term used to describe a number of different diseases that ultimately affect cognitive functioning. Alzheimer’s disease is the most common form of dementia, making up 60–80% of all dementia cases. According to the National Institute on Aging, those diagnosed with Alzheimer’s disease and other forms of dementia often experience loss of short-term memory, inability to make sound judgments, and difficulty with communication, understanding, and expressing thoughts. As dementia progresses, its symptoms often interfere with a person’s daily life and activities. A dementia diagnosis can have a profound impact on the person diagnosed, their family members, and their caregivers. It’s not uncommon for a dementia diagnosis to bring about feelings of guilt, loss, and grief both for the person receiving the diagnosis and their loved ones.
Feelings after a Dementia Diagnosis
After a dementia diagnosis, it’s common to think about how dementia will affect your loved one and the losses that accompany the disease. Family and friends may also think about the future and what it looks like now that dementia is in the picture. As the disease progresses, you may start to wonder how it will affect your loved one’s physical and mental abilities, relationships, and plans for the future. According to the Alzheimer’s Society, this type of thinking, or thinking ahead to things that may happen in the future, is called anticipatory grief. Grief is a normal part of a dementia diagnosis and can come and go or stay for a period of time. Sometimes you may feel like you’re coping well, and other times you may feel depressed or withdrawn. Grief can often look like sadness, but it can also present itself in different forms and emotions. According to the Alzheimer’s Association, common feelings include denial, anger, guilt, and acceptance and look like the following:
- Denial. You may hope that the person is not ill, expect them to get better, convince yourself that the person has not changed, or attempt to rationalize problematic behavior.
- Anger. You may become frustrated with your loved one, resent the demands of caregiving, resent family members who cannot or will not help provide care, or experience feelings of abandonment.
- Guilt. You may have unrealistic expectations of yourself, such as trying to visit your loved one every day or doing everything for them without additional help. Guilt can also include feeling bad because you still enjoy life or have negative thoughts about the person.
- Acceptance. Grief can also take the form of acceptance. You may learn to live in the moment, find meaning in caring for someone with a progressive disease, understand how grief has impacted you, and appreciate the personal growth that comes with surviving loss.
Supporting a Person with Dementia
Your loved one might experience a wide variety of emotions after their diagnosis. They may feel relief after receiving an answer for their symptoms, but they might also develop feelings of grief and loss as their condition progresses. This can be a difficult time for your loved one, but there are also small things you can do to show your support, according to the Alzheimer’s Association:
- Keep the person involved. It’s not uncommon for those with dementia to feel a sudden loss of independence. It’s important to keep your loved one involved in decisions about their health, finances, and what happens after death. Keep in mind—it’s essential to have these conversations during the first stages of the disease.
- Give the person time to express how they’re feeling. As the disease progresses, your loved one will need to find other ways to express themselves. Those with dementia often find creative expression a great way to communicate their feelings nonverbally. Crafts, music, and art can all be productive ways of expression.
- Support their interests. Keep in mind many activities and hobbies can be adapted to fit the needs of your loved one as their condition progresses. You might also consider helping your loved one find new activities that they enjoy.
Tips for Coping with Grief and Loss
Just as a dementia diagnosis is difficult for those who receive it, it’s also challenging for family members and friends. Here are a few ways to cope with the grief and guilt that often accompany a loved one’s diagnosis:
- Embrace your feelings. Grief is not a linear process. Think about all of your feelings—both the positive and the negative—and try your best to accept them. Journaling, talking to a licensed therapist, and finding creative ways to express yourself can help you process your emotions throughout the journey.
- Accept the stages of grief. As dementia progresses, it’s common to go through the stages of grief over and over. Accepting this process can help you understand why you’re feeling the way you do.
- Combat loneliness. Grief can often bring about feelings of isolation and loneliness, which can also lead to social withdrawal. However, this is an important time to build and rely on your support network. Consider making weekly plans with your friends and family members in order to take a break from stress.
Living with Dementia at Inspīr
At Inspīr, we know how difficult it can be to receive a dementia diagnosis, both for the one receiving it as well as their family and friends. We offer dementia support and create experiences specifically designed for those with dementia in Oceana Memory Care.