How do I cope with the changes of dementia?
If you are living with dementia
Feelings
Experiencing changes related to memory loss or dementia may lead to a range of different emotions. Feelings of shock, sadness, frustration, embarrassment, anger and loss are all common when dealing with memory changes. Of course, feelings of happiness, pleasure and joy can also be experienced while living with dementia.
It is normal to experience a range of feelings, and there are ways to help find a balance between sadness and frustration and happiness and pleasure.
When first receiving a diagnosis of dementia, you may feel shocked. “Why me?” and “What does this mean?” are common questions people ask themselves. With any major news it is usual to feel distressed for a time while adjusting to the new information and making sense of what it means. In time, these feelings usually diminish as you understand what dementia is and find ways to adjust.
Alternatively, some people are relieved to have an explanation for the memory and other problems they have been noticing over time. They can move on with life knowing the reason for their symptoms and what they are now dealing with.
What to try
Emotional reactions are very normal because you are facing many challenges and adjustments. Everyone has their own way of dealing with their feelings. The important thing is to find ways that help cope with any difficult feelings.
Experience the feeling. Allow yourself to really feel what you are feeling, no matter what it is. Denying the feelings and hoping they will go away tends to intensify whatever feelings you are experiencing.
Talk to a trusted family member or friend may help. Sharing feelings often helps to understand and reduce them. You might like to consider talking to a counsellor at Dementia Australia.
Cry. Tears can be very therapeutic because they release ’feel good’ chemicals in the body. Let them cleanse and relieve the sadness inside. Laughing also releases ‘feel good’ chemicals in the body, so finding any opportunity to laugh can be a big help.
Enjoy activities. Doing something you enjoy or gain pleasure from can be a big help if you are feeling down. Focus on the things you are still able to do and enjoy them as much as you can.
You might like to try using other ways to express your feelings. You may find music, aromatherapy, art, dance or gentle exercise makes you feel good. If you have the opportunity to try some of these activities, give it a go.
A sense of wellbeing may be gained from religious activities, meditation, appreciating art, enjoying a sunset, walking along the beach, or spending time with family. It is very important to keep enjoying anything that gives meaning to your life or a sense of pleasure.
If you are a carer, family member or friend of a person living with dementia
Feelings
When caring for someone with dementia you may have to deal with many different feelings, as the needs of the person with dementia changes over time.
You may experience a range of very different and often extreme feelings. This is particularly difficult because as dementia gradually causes the person’s abilities and personality to change the nature of your relationship will also change. There is no simple way to deal with these feelings, but it may help to know that the complex and changeable emotions you feel are completely normal.
What to try
Feel the pain. Allow yourself to really feel what you are feeling, no matter what that is. Denying the feelings only intensifies and prolongs the pain.
Talk. It is important to talk about your feelings even at the most difficult times. It can be helpful to talk to a person outside the family, such as a counsellor.
Keep a journal. A journal is a private place where anything can be written including unfulfilled wishes, guilt, angers and any other thoughts and feelings.
Let go. Don’t be engulfed by bitterness. Resentment is a heavy load and can only continue the hurt. If there is a source of anger, try to resolve it.
Find comfort. Different people have different ways of finding comfort. For many there is comfort in rituals, whether prayer, meditation or other activities.
Hold off. Tread carefully before making decisions. Thoroughly explore all options before making major steps. You can be vulnerable at times.
Be kind to yourself. Be patient with your feelings.
Laugh. Finding joy in life can be one way of honouring the happy times that used to be shared.
You are not alone
Whether you live with dementia or care for someone who does, it is important to remember you are not alone and there is support available for you.
Dementia Australia offers support, information, education and counselling. The National Dementia Helpline is available 24 hours a day, 7 days a week, 365 days a year and can be contacted on 1800 100 500.
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To my family and friends Heather was diagnosed with Alzheimer’s disease four years ago. There’s much she’d like her family and friends to know about living with dementia, and how she’d like to be treated.
What changes can I expect? Dementia affects people in different ways and at different times. So, what changes can you expect if you are caring for someone, especially in the later stages of dementia?
How can I live well with dementia? More than two-thirds of people living with dementia live in the community. When supported to live well at home, these people are less likely to enter residential aged care prematurely for a variety of reasons.
How can I plan for the future? Dementia affects people differently. One person may begin to lose the ability to handle money at an early stage, while others may keep these skills much longer. So how do you plan for these changes?
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