Rudolph C. Hatfield, PhD., edited by Kathryn Patricelli, MA
The diagnosis of a dementia affects everyone in the family. In many cases, spouses, siblings, and even children attempt to care for a loved one diagnosed with dementia. If you decide to be a primary caregiver, it is important to understand why you want to become the primary caregiver for a person with dementia and to make sure you understand what you are getting into. Caregivers who have significant resentment against the person they are caring for often do far more harm than they do good. It is a good idea to identify your intentions and goals as a caregiver, and to make sure that you understand exactly what to expect both now and in the future.
Some tips to assist caregivers for people with dementia include:
Do your best to understand dementia. Ask questions of treatment providers, read material, and make sure that you understand the basics about dementia.
Do your best to understand caregiving. Read books and materials on effective caregiving. Make sure you can handle all the responsibilities and tasks required in the situation.
Your biggest enemy as a caregiver is burnout. Caregivers can suffer burnout very quickly. One of the key ways to be successful at caregiving is to be able to step away from time to time. Do not try and handle the situation without assistance. Schedule regular off days and off times and have someone else attend to the needs of your loved one. Caregivers need to get away from the situation in the same way that any person needs time away from their job. Make time for yourself as well as for the person you are caring for, otherwise your health will deteriorate faster than their health will.
Attend to your personal needs in the same way and with the same manner of care that you attend to the needs of the person that you are caring for. As a caregiver you can put the needs of the other person first, but make yourself a close second.
Understand and learn about caregiver burnout. This way you can recognize the signs and symptoms of potential burnout and address them.
One thing to understand is that harboring the attitude that you are the only person that can be the caregiver for your loved one is a form of arrogance. Part of being an effective caregiver is understanding when to take control of the situation, and when to give control to someone else. Thinking that you can handle every situation is another form of arrogance.
Ensure that your expectations of the person that you are caring for are realistic. Also, be prepared to adjust your expectations as the person's dementia progresses.
Work with the doctors and other healthcare workers to ensure the best care and setting for your loved one. Do not be afraid to ask questions or ask for help.
Always immediately attend to the medical needs of the person you are caring for. When the person's needs require professional attention, do not hesitate to get professional help. Do not attempt to do things you are not qualified to do.
Do not put off legal matters such as guardianship issues, power of attorney issues, etc. These should be addressed as soon as possible when the person who has dementia is still able to participate in their own decision-making.
Plan to do things with the person you are caring for. Do not simply become a waitperson. Instead, view part of the caregiving process as attempting to keep the person as active and as involved in their own care as is possible. This will make them happy as well. On the other hand, remember to keep your expectations realistic and not to demand too much from the person. Even having the person perform meaningless activities that keep them occupied is better than having them remain idle. Work with the person based on their capabilities.
Remember to adjust your expectations accordingly. Work with treatment providers to understand the person's level of functioning and capabilities. Be ready to change your expectations according to the level of decline that the person experiences.
Again, when in doubt, ask for assistance. Do not be afraid to bother physicians, nurses, or other healthcare workers if you have a question about anything.
If possible, talk to other people who have been caregivers and learn from them. One thing that all caregivers of people with dementia should be prepared for is the inevitable decline in the person's capabilities as well as understanding that there may come a time that they may no longer be able to effectively care for the person. It is extremely important to accept that possibility. Organizations that might be useful to investigate are Caregivers Anonymous and online caregiver support groups.