Living Well - Emotional Well-Being

If you, or someone in your family, has received a diagnosis of Alzheimer's disease or a related dementia, it is normal to feel a range of emotions. Some people feel shocked, while other people are relieved that their symptoms have been diagnosed⁽¹⁾. Some common emotional reactions include:

• Shock and denial
• Anger or resentment
• Fear
• Feeling overwhelmed
• Depression
• Loneliness
• Acceptance
• Relief
• Hope⁽²⁾

We all have our own ways of coping with our emotions. The important thing is to acknowledge the emotions you are experiencing and find positive ways to address them.

When you or someone you care about has been diagnosed with a dementia, it is important to find out as much information as you can about the type of dementia you or they have. Often, when you have this information it can provide a sense of control and reduce the fear that comes with the diagnosis. Create a list of questions that you have to ask your doctor. If your doctor cannot answer your questions, search out other avenues to get the information you need such as contacting your local Alzheimer Society chapter.

It is a good idea to have someone to talk to about how you feel. This will help to get your emotions out in the open. You might want to choose a close friend or family member who you trust. It might also help to speak with other individuals who are living with a dementia. This will give you the chance to share your emotions and offer each other support⁽¹⁾.

Contact your local Alzheimer Society to see if there is an early-stage support group or social group in your community. If there are no support groups available in your community, you may want to consider helping the Society to start one. Your local Alzheimer Society may also be able to connect you with someone else who can provide support⁽¹⁾.

The Dementia Advocacy and Support Network International (DASNI) is an internet based support network focusing on bringing together people with dementia and their partners in care. DASNI currently provides several ways to connect with other people with dementia, which includes an internet support group and an email community. DASNI also hosts Internet chats on a variety of topics related to dementia, twice per day. These chats aim to ease feelings of loneliness and isolation, as well as educate persons with dementia and their partners in care about the disease process. For more information about DASNI, visit their website at http://dasninternational.org/⁽³⁾.

When people are distressed, it can often be difficult for them to find the right words to express their emotions and determine why they are feeling distressed. Because each individual experiences life with dementia in different ways, expressing your emotions may become harder for you. It may also be harder to understand what people are saying to you. Remember to take your time when you are trying to express yourself. It is okay to tell people that you need more time for thinking, communicating and remembering things. If you do not understand something, it is okay to ask someone to repeat it. Also, if there are too many people around or it is too noisy, ask to go somewhere quiet. It is okay if you forget a thought, it may come back to you.

It is important to find meaningful ways to express grief. This can involve crying, but there are other ways to express grief which you may find helpful, such as through:

• Writing – songs, poetry, sayings, stories
• Painting or other art forms
• Capturing one's biography – written, audio, or video-recorded
• Creating a memory box/album
• Reminiscing with others
• Engaging in other valued activities, such as golfing
• Listening to music or dancing⁽¹⁾

Writing down your emotions might also help you verbalize them. Consider beginning a journal. Many people find that writing things down is a good way to reflect on and express how they are feeling. You may experience a wide range of emotions and feelings throughout the disease process, and this may include loss and grief, which can cause physical side effects. Keeping a journal may help you to identify where you are hurting, and how you are hurting, so you are then able to take steps to deal with grief. Additionally, keeping a journal is a good reference for doctor's appointments and can help you recall emotional reactions and describe them to your doctor⁽²⁾.

You are not going crazy, but Alzheimer's disease or other related dementias might make you feel like you are losing control. Telling other people around you how you feel can help. Reflect on what it is that is making you feel like you are losing control and talk with others about how they can support you in feeling more in control. It is also a good idea to share these emotions with other people who have dementia⁽³⁾.

It is natural to wonder why this is happening to you and to feel angry about being diagnosed with a dementia. It is also normal to be in a bad mood sometimes. All human beings have good days and bad days and this is no different for those experiencing dementia. When you are having a bad day, remember tomorrow is a new day. Try to do something that you enjoy to make you feel better. If you are feeling angry, try talking to a counsellor who knows about dementia. Your doctor or the Alzheimer's Society in your community can recommend a counsellor for you⁽⁴⁾.

Receiving a diagnosis of dementia can be overwhelming, and this may cause different reactions and emotions to surface. The grieving process does not have a set timeframe, and is often ongoing throughout the disease process. Dealing with emotions and feelings of loss and grief is a different journey for each person with dementia and each partner in care. Some people are able to adjust more quickly, but it is important to know it is okay to cry, and to allow yourself time to be sad and to release those feelings⁽²⁾.

Try talking to the people in your life you are close with and trust. If you continue to feel sad for a long period of time make sure to tell you doctor. Chronic feelings of sadness may be a sign of depression, in which case, you doctor can help you find ways to deal with depression⁽⁴⁾. Other things that might help include:

• Spending time with a friend or your family
• Participating in an activity you enjoy
• Watching a funny TV show or movie
• Letting yourself have a good cry
• Focusing on the skills and abilities you still have⁽⁵⁾
• Becoming knowledgeable about the disease by seeking out reliable information about living positively with the disease
• Joining a support group, to connect with others who are experiencing memory loss or who are partners in care
• Focusing on living each day and enjoying the moment
• Drawing on your spirituality; use meditation or prayer to cope
• Taking steps to plan for the future⁽²⁾

*See section below on 'How to Manage Depression'.

You might notice yourself getting lost, forgetting familiar faces, and struggling to find the right words. The first thing you need to do is to accept your diagnosis. Once you begin taking steps to accept the diagnosis, explaining to people that you are having trouble with your memory because of a dementia may help to ease those feelings of embarrassment. Remember, people can be very understanding if they know about the problem. Also, a good sense of humour is essential. You need to be able to laugh at yourself. If you laugh at yourself, others will laugh with you⁽⁴⁾.

It is common to feel lonely when you think that people around you can't understand what you are going through. Talking about your emotions with people who care about you can help. Be sure to explain what you know about dementia to your family and friends, or have someone else do it. It is important that they understand what you are going through so that they can help. If you just need them listen, tell them that. Make sure to tell your friends and family how much their visits mean to you.

It is also helpful to talk with other people who have been diagnosed with a dementia. Your local Alzheimer Society will be able to connect you with other people who are having the same experiences as you⁽⁴⁾.

Work hard to remain engaged and maintain your connections to your community. These connections can help combat the loneliness you may feel from time to time.

It is natural to feel frustrated when activities that once were so easy become more challenging. This is one of the most common emotions people with dementia express experiencing. Tell people you trust why you are frustrated. They might be able to help you or offer advice. Discuss with others how you might adapt a task or activity so you can still perform it independently but also do not be afraid to ask for help. Also, focus on what you are able to do now. By focusing on the positives, you may be able to minimize feeling frustrated because of the changes that are happening⁽⁴⁾.

Other ways to deal with feelings of frustration include:

• Make sure to pace yourself. Try not to overwhelm yourself by taking on too many responsibilities or activities at once.
• When an environment becomes too noisy, try to find a quiet spot where you can let your mind clear. You may also find it helpful to wear headphones or ear plugs to drown out the noise. Additionally, headphones can be a helpful way to concentrate when you are watching TV.
• When you feel frustrated, try taking a nap to re-energize and focus.
• It can be frustrating to make decisions when you have too many options, so try to remove clutter. For example, keep your toothpaste and toothbrush on the counter in the bathroom to access easily, while avoiding getting sidetracked with other options in cabinets or drawers.
• Keep things simple!⁽⁶⁾

It is natural to feel guilty about asking for help because we value our independence and do not want to be a burden on others. Part of the problem is that independence is valued so much more in our North American culture than the value we place on interdependence and depending on one another. Not many of us like to rely on other people for help. But you should not feel guilty about asking others for help. If others asked you for your help, you likely would assist them. Asking for and being okay with receiving help and support from others is important for living well with dementia. Help and support from others is also important for family members to manage well in their care roles. When you are feeling guilty make sure to talk honestly and openly about how you are feeling with people you trust⁽⁴⁾.

There are many things that you can do to help you feel more positive about living with a dementia:

• Focus on what you are still able to do.
• Stay connected to your friends and family.
• Continue to participate in activities that you enjoy and are meaningful to you.
• Eat properly and exercise.
• Take your medications as prescribed.
• Use humour.
• Live in the moment⁽⁷⁾.

Physical and mental exercise can have several benefits for people with dementia. In particular, they can help with reducing stress and depression. If you incorporate physical and mental activity in your life during the early stages of dementia, and make it part of your daily routine, it is more likely that you will continue these activities as the disease progresses. When choosing activities, make sure they are enjoyable and within your ability to avoid any potential stress or frustration⁽³⁾. You can try:

• Puzzles (e.g., crosswords, Sudoku, word find, etc.)
• Dancing
• Gardening
• Meditation
• Walking
• Reading
• Playing a musical instrument⁽⁷⁾

Remember that if you are going to start a physical exercise program, be sure to talk to your doctor first.

Living with a dementia, or supporting someone with a dementia, can be stressful. Recognizing signs of stress in yourself or someone you care about is important. If the following symptoms occur on a regular basis, it is important that you contact your doctor or your local Alzheimer Society⁽¹⁾.

• You are in denial about the disease and its effect on you
• You are angry at yourself and others
• You are withdrawing socially from your friends and family and activities you once enjoyed
• You are anxious about facing another day and about what the future holds
• You feel sad and hopeless much of the time
• You are exhausted, or don't have the energy to complete daily tasks
• You have trouble sleeping or you wake up in the middle of the night with nightmares
• You have emotional reactions such as crying at minor upsets and you are irritable
• You have a hard time concentrating and focusing on tasks
• You are experiencing more health problems (losing or gaining weight, getting sick more often, developing backaches or high blood pressure)⁽²⁾

There are things you can do to help maintain your health and wellbeing. It might be helpful to learn as much as you can about the disease. This will make it easier to understand how living with a dementia can affect you or your loved one. Learning about dementia can also help you to adapt to any changes you are experiencing.

It is also important to be realistic about how much you can do as a person living with a dementia or as a care partner. Prioritize your activities by what you value most.

Learning to accept your feelings is also beneficial for reducing stress and anxiety. You may experience many different emotions which can seem confusing. But these emotions are normal. Sharing these emotions with your family members and friends may help relieve feelings of stress and anxiety. It can also help create greater understanding of what is happening, and how family members and friends can help support you along the journey⁽¹⁾. For more information on managing stress, visit the Quality of Life section of the website, under Tips and Strategies for Daily Living.

Try to stay positive by focusing on what you can do, and not what you cannot do! Remember you can still experience special and rewarding times. The following is a list of strategies to help you stay healthy and positive:

• Try to always look at the bright side of certain situations.
• Keep your sense of humour. Laughing can be a good way to cope with stress.
• Eat proper meals and make sure to exercise regularly.
• Schedule some time for relaxing every day.
• Have regular appointments with your doctor.
• Take time for your favourite interests and hobbies.
• Keep in touch with family and friends to maintain connections and to prevent feeling lonely or isolated.
• Ask for help when you need it.
• Try going to a support group if one is in the area.
• Contact your local Alzheimer Society.
• Plan for the future by reviewing your financial situation and your personal care choices.
• Consider your future health decisions and record them. Also think about alternate plans for care if you are the care partner of someone with a dementia. This can help to reduce your anxiety about the future⁽¹⁾.

Depression impacts people in different ways, but there are some common symptoms to look out for which include:

• Feelings of sadness or hopelessness
• Heightened anxiety
• Experiencing disturbances in sleeping patterns (e.g., not being able to sleep, or sleeping too much)
• Changes in diet (e.g., overeating, or loss of interest in food)
• Aches and pains
• A loss of interest in activities that were once enjoyed
• Low self-esteem, or feelings of worthlessness
• Feelings of isolation and loneliness⁽¹⁾

It is normal to feel sad or unhappy considering the many changes that are associated with dementia. Do not try to deal with these emotions alone. Be sure to talk with other people who can help you deal with your feelings⁽²⁾. If your feelings of sadness and hopelessness are overwhelming, make an appointment with your doctor, and talk openly and honestly about what you are feeling. Your doctor will be able to determine the best way to treat your depression. You may need some professional counselling or medication.

Yes, persons with dementia can experience the loss of their abilities, employment, meaningful relationships and activities. Family members also experience many losses. It is normal to grieve these losses. Grief associated with dementia is often misunderstood because it does not follow the accepted pattern of grief following the loss of life. Everyone grieves in their own way and at their own pace. Try to understand that loss and grief are ongoing throughout the process of the disease⁽¹⁾.

After being diagnosed, you will need time to think. Be honest with yourself about the disease because this will help you to communicate and share your grief with others. Take some time to think about what you are going to say about the disease and who you will tell⁽¹⁾.

Find a person who has always been there for you and talk to them. Let them know that you "just need to talk". Be open and honest about the disease and what you need from them. Do not assume they will know what you need. It might be helpful to share advice with other people who are experiencing similar issues⁽¹⁾.

Support for dealing with loss and grief can come from a friend, a professional organization (such as the Alzheimer Society) or a professional counsellor. Some tips for getting more support include:

• Spend more time with your family and friends.
• Rebuild relationships that are important to you if possible.
• Commit to maintaining your relationships and find new ways to be together with those you are close to.
• Join your local community/seniors centre.
• Participate in a local early stage support group or family support group.
• Include your family in the process of diagnosis and disease progression.
• Build new support networks⁽²⁾.

The following suggestions might help you to take care of yourself while you are grieving.

• Do not ignore your grief, but take steps to deal with it.
• Recognize the reality of what the losses mean to you and acknowledge them.
• Do not judge your grief.
• Know it is okay to cry, feel sad.
• Take the time you need to grieve.
• Treat yourself to something nice.
• Give yourself permission to take a break.
• Keep humour in your life.
• Try to focus on the good things in your life.
• Accept the new normal, that you are the same person, but your life is taking a different direction.
• Try to stay focused on today and enjoy the moment.
• Draw on spirituality by turning to your spiritual leaders or community and use prayer or medication.
• Keep a journal⁽²⁾.

Becoming knowledgeable about Alzheimer's disease and planning ahead can help with the grieving process over time. You might want to gather information quickly, or take your time. This information will help you to plan ahead for your condition⁽¹⁾. Here are some more strategies:

• Look for information on how to live positively with the disease
• Look at more than one source of information
• Read reliable information
• Be critical of the information you read
• Recognize that not all information will be suited towards your situation
• Talk to other people experiencing memory loss or other partners in care⁽¹⁾.

Planning ahead can also help you deal with the unknown. The following are suggestions for the planning process:

• Recognize that you may not have control over the progression of the disease, but you can control other parts of your life.
• Plan for losses and how you will deal with certain situations (e.g., loss of driver's license, loss of work, need for home care, placement in a long term care facility).
• Set a realistic goal everyday (exercise, play with the grandkids, get groceries).
• Set realistic goals for tomorrow the night before.
• Treat yourself for meeting your goals (make sure it is something you like).
• Do something positive every day.
• Plan for the future, but do not dwell on it (revisit your plan as necessary)⁽²⁾.

Even though dealing with loss and grief are difficult, it is still possible to find joy and hope while living with dementia. Some people with dementia and their family members talk about the experiences they have had or the strength they have gained that might not have happened if it wasn't for their experience of living with dementia. Keep a positive outlook. Accepting a disease can be difficult, but this new reality can make room for new possibilities. Experiencing an illness such as dementia can result in:

• Learning to value yourself and your contributions.
• Learning new things about yourself.
• Appreciating the small things in life that are often overlooked or taken for granted.
• Becoming more compassionate towards other people.
• Developing inner strength and confidence.
• Developing new skills and talents.
• Being open to new ways of learning.
• Meeting new friends through a support group⁽²⁾.

Here are some strategies to help you keep a positive outlook:

• Express your grief through writing, painting, or creating a memory box or album.
• Reminisce with others.
• Write down your feelings in a journal.
• Listen to music or dance.
• Start your day with a positive affirmation. Some examples include:
  • "I am grateful for all that I have received."
  • "I can do it."
  • "I am not alone."
• Considering starting a thankfulness journal to write down your daily affirmations and to acknowledge what you are grateful for. By writing down these positive thoughts, you can build happiness by maintaining a positive outlook.
• Choose a location, such as a favourite chair. At the end of the day, take up a position in this favourite location and reflect on the positive aspects of your day and what you are grateful for.
• Be an advocate for people with dementia and their care partners.
• Be proactive about creating a life plan that focuses on relationships, finances and learning about the disease.
• Live in the moment⁽¹⁾.

Misunderstandings about dementia can cause fear, harm and suffering for those diagnosed with dementia and their family members. But people with dementia and their family members find ways to rise above this fear and stigma.

Over the years, a number of false ideas have developed around Alzheimer's disease and dementia. These myths can prevent people from understanding the disease and how to live with it. The following list includes Alzheimer's disease myths and realities.

Unfortunately, stereotypes surrounding dementia still exist, but there are ways to cope with the stigma these stereotypes create in society, which include:

• Finding friends or family members who are supportive and willing to listen
• Being positive
• Maintaining your sense of humour
• Connecting with groups in the community, who support you, and can take action with you
• Remembering to live life to the fullest and considering what makes life meaningful to you
• Talking, writing and sharing your experiences
• Speaking out about dementia and challenging the stereotypes⁽²⁾