Managing emotions and the stress of living with dementia

Acknowledging your emotions

"Some people try to hide their challenges from their family and friends for fear of being ostracized. I have met people living with dementia from other cultural and ethnic backgrounds who have experienced other people’s assumptions or beliefs that dementia is a punishment rather than a disease that needs to be addressed." - Mario, from Burnaby, British Columbia. Mario lives with mixed dementia (vascular dementia and Alzheimer's disease).

As a person living with dementia, you may be feeling overwhelmed, scared or nervous about your future. You are likely concerned about how the changes brought on my dementia will affect you, where to get the help and support you need and what your future will look like.

That's why it's important that the first step you take after diagnosis, before anything else, is to acknowledge the many emotions that you're likely experiencing:

• Know that it's normal for both you and your family to experience many mixed emotions.
• Hiding your emotions is not healthy. While some degree of denial is normal and even helpful in certain cases, not acknowledging your emotions can add to the stress you're likely already feeling. It can also contribute to feelings of depression that can negatively affect your quality of life.
• Coming to terms with living with dementia can help you care for yourself, seek the practical help and emotional support you need, and set you on the path to live as well as possible.

Below, learn about the emotions that people living with dementia commonly experience, and get strategies on how you can manage them. These strategies are informed by the advice of people living with dementia, who know what you are going through.

Managing common reactions and feelings

We asked some people about their reactions and feelings about living with dementia. Here are some of their comments:

Denial: "Sometimes I think they made a mistake, I don't have Alzheimer's disease. I'm still functioning."

Anger: "It angers me that I can't pull myself up."

Anxiety: "I'm scared about losing my abilities."

Guilt: "I feel guilty, like a dead weight around my husband's neck."

Frustration: "I start talking to people, then I forget what I'm talking about; it blocks me."

Hurt: "If I make a mistake, don't correct me. That hurts."

Humour: "I have to laugh. That's therapy. If I didn't laugh, I would cry."

Sadness: "I feel the end of something."

Depression: "It's all black."

Loneliness: "You are not in the circle but on the outside."

Acceptance: "I take it as it comes at this stage of the game."

Hope: "You have to fight. Hang on. One of these days they will find a cure."

Experiencing this range of emotions is a normal reaction to having a disease whose symptoms affect the way you see yourself. As one person with Alzheimer’s disease says, “Your inner world is changing.”

Strategies to help you manage these feelings

• Talk to someone about how you feel. This is one way to get these feelings out into the open. Talk to a close friend, a family member or someone with whom you feel comfortable.
• Meet with other people who live with dementia. Together, you can share your feelings and experiences and offer each other social and emotional support.
• Contact your local Alzheimer Society to see if there is a support group in your area. If not, you may be interested in helping the Society start one. Another option may be to have the Society get you in touch with someone who can provide one-on-one support.
• Recognize that each of us has our own way of dealing with our feelings. The important thing is to find a way or ways of coping with these emotions that makes you feel better.
• Listen to what other people living with dementia suggest. When we asked the same people who shared their reactions and feeling how they coped with their emotions, here's what they said:
  • "Acknowledge it."
  • "Take one day at a time."
  • "Join a support group. The more you speak, you get a load off your chest."
  • "Be with people you can laugh with."
  • "Go for a walk with someone."
  • "Don't be shy. Ask for help."
  • "Tell people if they hurt your feelings."
  • "Animals are good for people. Animals are calming."
  • "Don't stay enclosed, isolated. Get out."
  • "Never give up hope. Living is worth it.

Managing stress

Experiencing stress is part of everyday life. However, the life-changing nature of dementia means it will take work to manage the changes in your abilities, plan for your future and live well – and this will likely bring additional stress.

When stress persists over time, it can cause vascular changes and chemical imbalances that are damaging to your brain and other cells in your body.

It's important, then, that you reduce your stress however possible. This is key to living well with dementia and maintaining your brain health for as long as possible.

Strategies to help you manage stress

• Recognize the symptoms of chronic stress:
  • Emotional: Depression, tension, anxiety, anger, worry and/or fear.
  • Physical: Headaches, fatigue, insomnia and/or sweating.
  • Mental: Poor concentration, memory loss, indecisiveness and/or confusion.
  • Behavioural: Fidgeting, overeating, alcohol and/or drug abuse.
• Take personal time for yourself. Exercise, relaxation, entertainment, hobbies and socializing are essential parts of our health and well-being. Everyone needs to find a balance that limits stress and helps maintain optimal health. Methods could be through meditation, deep breathing, massage or physical exercise – the key is to explore a variety of techniques and find those that work for you.
• Set realistic expectations. We often assume our expectations are reasonable, but this isn't always the case. By identifying what you can change and what cannot be changed, you can single out unrealistic expectations. Then, you can focus on what can benefit yourself right away.
• Get plenty of sleep. You need at least seven hours of sleep per night. Sleep deprivation can significantly impair your memory, mood and function.
• Seek and accept support. Reach out to a friend or family member that you trust. Talk about what's giving you stress. If symptoms of stress persist, contact your doctor.

Managing grief

Grief is a sense of loss, and one of the strongest emotions you may feel. You may be feeling grief over the loss of your abilities, relationships and future plans.

Grief is not always visible from the outside. You may not even be aware that you are feeling grief. There are periods when you can cope well and make the best of things. At other times, you may feel overwhelmed by sadness or anger, or you may simply feel numb.

Feelings like these are a normal part of grieving, but if you experience them, it's important to realize that you may be under a great deal of stress and you may need to seek emotional support for yourself.

Strategies to help you manage grief

• Feel the pain. Allow yourself to really feel what you are feeling, no matter what that is. Denying your feelings only intensifies and prolongs the pain.
• Talk about what your grief. Share the pain. It's important to talk about your feelings even at the most difficult times. Sharing grief will help diminish it. It can be helpful to talk to a person outside the family, such as a counsellor or trusted friend. Joining an Alzheimer Society support group gives you the opportunity to talk with others who are on a similar journey.
• Keep a journal. A journal is a private place where anything can be written including unfulfilled wishes, guilt, anger and any other thoughts and feelings. A journal is a place where you can explore your frustrations and express your thoughts and ideas without interruption.
• Find comfort. Different people have different ways of finding comfort. For many there is comfort in rituals, such as prayer, meditation or other activities.
• Hold off. Tread carefully before making decisions. Thoroughly explore all options before making major steps. You may be unable to make important decisions at times.

Managing depression

Depression is a condition in which you feel sad, hopeless or irritable most of the time. You may also experience anxiety and feelings of isolation.

Up to 40 to 50% of people living with dementia experience depression at some point. Depression can make the symptoms of dementias worse. For example, depression can cause increased forgetfulness, confusion, and anxiety.

Considering the many changes associated with dementia, it's understandable that you may feel sad or unhappy. While it's common for people living with dementia to experience depression, it shouldn't be regarded as inevitable. Depression is treatable.

Strategies to help you manage depression

• Don't carry the burden alone. Talk to people who can help you deal with your feelings, like a good friend or a trusted member of your family.
• Try some activities that can help take your mind off your worries. This could be playing your favourite music, gardening, taking a walk, caring for pets, or anything else that helps you feel better. These activities can have a beneficial effect.
• Be kind to yourself. Be patient with your feelings. Find a balance between the happy and sad person, the angry and peaceful, and the guilty and glad self. Have patience with yourself.
• Learn to laugh again. Rediscover your sense of humour. Watch a funny movie, read the comics, or spend time with a friend who makes you laugh.
• Talk to your doctor. If the feelings of sadness and hopelessness become overwhelming, make an appointment to see your doctor. Professional counselling may be recommended or medication may be considered.

Finding support

No matter what you're feeling, getting support is vital to helping you manage your emotions. It can be especially helpful to meet with other people who live with dementia. Together, you can share your feelings and experiences, and offer each other social and emotional support.

If symptoms of stress or depression persist, contact your doctor.

More useful links and resources

Shared experiences: Suggestions for living well with Alzheimer’s disease. Alzheimer Society of Canada. This booklet, informed by the real experiences and advice of Canadians living with Alzheimer's disease, can help answer common questions and concerns about living with Alzheimer's.

MyGrief.ca - Making sense of intense emotions. Canadian Virtual Hospice. This online module can help people living with dementia and caregivers accept and manage intense emotions such as anger, guilt, fear, sadness and loneliness. This resource was developed by a team of grief experts and people who have experienced significant loss in their own lives.

MyGrief.ca - Caring for yourself. Canadian Virtual Hospice. This online module looks at obstacles to looking after ourselves, and gives advice on how to make your own physical and emotional health a priority while managing feelings of grief. It also makes suggestions for self-care. This resource was developed by a team of grief experts and people who have experienced significant loss in their own lives.

Depression. Alzheimer's Association. This online resource from the U.S.-based dementia organization gives information on the symptoms of depression, and how to diagnose and treat dementia.

Depression in older adults: A guide for seniors and their families. Canadian Coalition for Seniors' Mental Health, 2009. This downloadable resource can help people living with dementia and families understand and manage depression.