What is dementia?
Dementia is not a specific condition or disease. It is a term that is used to describe a range of symptoms associated with loss of memory, thinking skills and behaviour skills that significantly reduce a person's ability to perform everyday activities.
Dementia is caused by damage to brain cells. As a result, brain cells have difficulty communicating with each other. The type of dementia that a person has depends on which cells have been damaged.
Knowing what you’re dealing with
It is important that to learn as much as you can about dementia so that you are best prepared to deal with the issues that will arise as a carer. Speak to the medical personnel dealing with the person you are caring for, ask questions, and ensure you understand exactly what they are saying. It’s not enough to know about dementia in general, you will need to fully understand the particular type of dementia that your person has developed. Starting point are What is dementia?, What is Alzheimer’s disease? and Types of dementia.
Managing your feelings
Among the most common types of emotional feelings that you are likely to encounter as a carer of someone with dementia are those related to guilt, anger and grief.
Guilt rears its head for several reasons. You may feel guilty because:
- you feel you are not fulfilling your carer duties to expectations;
- you sometimes get frustrated, impatient or angry toward the person you are caring for;
- you sometimes wish you did not have to care for this person;
- you are neglecting the needs of other important people in your life;
- you wish you had more time for your own interests;
- you are embarrassed by the public behaviour of the person you are caring for.
- you are planning to move the person into a care facility.
Do not beat yourself up about any of these. It is quite common to feel guilty under these circumstances.
It is also natural to feel angry and frustrated at times. This anger may be directed toward yourself, toward family members and friends who you believe could be doing more to help you, toward government and non-government agencies that you are relying on, or even toward the person you are caring for. The important thing is not to try to deal with this anger on your own. Speak to your GP, a counsellor or call the National Dementia Helpline on 1800 100 500.
Grief does not just occur when someone close to us has died. In the case of dementia, it is common grieve for the person with dementia, as they were before they developed the condition. After all, you are dealing with the loss of memories together, the relationship you once had, and even the future that was planned. As with anger, there is no need to grieve on your own. Seek help if you feel the grief is becoming overwhelming.
Here are some tips to help you manage your feelings associated with guilt, anger, grief and other emotions.
- Acknowledge your feelings and try to determine why you feel the way you do. You may be able to avoid such strong feelings next time.
- Don’t take on more than you are capable of. Nobody (except perhaps yourself) expects you to be a superhero. And certainly don’t compare yourself to others.
- Tell someone about your feelings. They can help with perspective and be a support for you. The person you talk to can be someone close to you or a professional.
- Try to rid yourself of negative thoughts before you go to bed at night, or at least when you wake up. Try to start each day in a positive frame of mind.
- Identify a ritual or practice or activity that calms you down and makes you feel better.
- If possible, do not make decisions while in an emotionally fragile state.
- Prioritise what needs to be done. Sometimes the least important matters take care of themselves or end up not needing to be done.
Keeping fit and healthy
While there is a focus on ensuring people with dementia keep fit and healthy, it is equally important that carers do so. Therefore, it is important to:
- maintain a healthy, well-balanced diet and eat regularly.
- maintain a regular physical exercise regime. Try to dedicate yourself to some form of physical exercise for 30 minutes every day.
- keep your brain active – try a crossword or sudoku puzzle every day.
- maintain your own interests and hobbies.
- continue to socialise with family and friends.
- get regular, undisturbed sleep.
And if you also have a disability or condition, ensure that you keep on top of its management.
Taking a break
Every carer needs a break. While caring for someone, ensure that you have adequate ‘me time’ every day. For this you may not need someone else to stand in. It may be a matter of engaging in one’s own preferred activities while the person you are caring for is resting. Or, depending on the person’s ability to cope alone, going for a walk, doing some shopping or sitting in a nearby park.
Longer term breaks do require other assistance. This can take the form of another family member or friend taking over, or seeking respite care for a day, a few days or even longer. CareAbout can help source respite care options in your area.
Caring for someone with dementia can be an extremely stressful, emotional, time-consuming and physically demanding task. If the person with dementia is able to continue living in their home, or that of a loved one, the ideal scenario is for the caring duties to be shared. This ensures that the emotional and physical burden does not fall on the shoulders of one person.
However, if/when you do seek residential care, do not rush into the first available option. Check various facilities, particularly focusing on those who provide specialist dementia care. To get some expert assistance and help with Aged Care Home placement contact CareAbout on 1300 036 028