Once the diagnosis has been made, a number of important issues need to be addressed. This is the time to learn about the disease and caregiving, to get things in order and to begin to build a base of support for the future. The person with the disease should be involved as much as is feasible in discussions on care options and preferences. The disease at this point manifests itself fairly unevenly. There are good days and not so good days in terms of ability to function and in terms of overall mood. You may at times doubt the diagnosis.
- Learn all you can about the disease and the treatment options. Read articles and books, attend educational workshops, talk with other caregivers and with knowledgeable health care professionals, contact our Helpline and search the web for useful information. (On our website, www.alz.org/ri, is a useful tool, CareFinder, which can help you understand and plan care options). Keep a notebook of important information about the disease and useful resources; this can be a good reference tool to start building.
- Find a health care professional with which you can work. This person might not be the person who diagnosed the disease. You need someone who understands the disease progression and respects the role that caregivers play in managing the disease.
- Get legal and financial affairs in order. This is the time to establish (or to review and update) a durable power of attorney for finances and for health care as well as a living will. An attorney who is knowledgeable about elder law issues can be helpful in looking at legal and financial issues. This is the time to survey financial assets and resources.
- Assess the abilities, health and safety of the person with dementia. Watch to see that medication is being taken correctly, personal hygiene is adequate, balanced meals are being eaten and wandering is not occurring. Be prepared to provide assistance as needed. Encourage an overall healthy lifestyle. Driving is an issue to assess and address at this point. If there is the slightest concern about safety, the person should not be driving.
- Find out the lay of the land. What services are available in the community to help with managing the disease? Develop a list of places to contact – e.g. adult day programs, home care agencies and long-term care facilities. Know what is out there so that when the time comes to access help, you know where to go.
- Set up a support system for yourself. Assess what resources you have. Who in your family or circle of friends would be most helpful? Think about ways (small and large) that they can assist you. If other family members are involved, keep lines of communication open and make sure you are on the same page in terms of care issues.
- Take care of yourself. Think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops suddenly or progresses quickly. It requires of the caregiver steady and thoughtful strides and good overall conditioning of the body and mind. Take regular breaks from caregiving right from the beginning. Accept help. Your life and the life of the person with the disease depend upon your caring for yourself.