Diagnosis
The first step in planning care is getting an accurate diagnosis. Seek out a dementia clinic at a university hospital or ask your doctor to refer you to a neurologist with expertise in dementia and neurodegenerative disease.
Educate Yourself
Learn what you can about dementia and neurodegenerative disease. Understanding what is happening to your loved one will help you cope better with the changes and behavioral symptoms of the illness and help you communicate with the medical team providing care. Accepting that the behavioral symptoms are part of the disease process will help you direct your energy toward workable solutions. When looking online, read well-known medical sites like the National Institutes of Health.
Join a Support Group
Talking with other caregivers who have gone or are going through a similar experience to yours can provide emotional support and practical advice. Contacts and support groups can be found through online communities or local organizations.
Assess the Situation
An objective analysis of your health, medical coverage, emotional state, and other commitments will help you figure out how much you can and cannot do yourself and what type of outside support will be needed to ensure your loved one’s health and safety.
Write down your assessment of:
- Your loved one’s ability to function independently, both cognitively and emotionally.
- The safety and adaptability of your home or physical environment.
- Your own health and emotional resources.
- Your other responsibilities at work, at home, to other family members, and in the community.
- The availability of family and friends to give you support and to share the care.
- Your financial resources, including insurance coverage and, if the person had been working, private disability insurance and the federal program, Social Security Disability Insurance (SSDI).
- Late-stage preparation for you and your family members.
- End-of-life preparation for you and your loved one.
A written document helps to avoid neglecting important issues. Review and update these observations periodically to help you determine if you need to make changes along the way.
Keep Good Records
Keep up-to-date records of emergency numbers, doctors, daily medications, special diets, backup people with contact information, behavioral triggers, and other pertinent information relating to your loved one’s care. Consider making copies of this record for the medical team and another trusted caregiver in case the information is needed in an emergency and you are unavailable.
Develop a Care Team
Keep a list of people you can contact for help, emotional support, or respite. Use these pages to explain to others that the seemingly bizarre behaviors you cope with are part of the brain disease. Your list may be short but don’t preclude people who can help by doing even small chores for you (grocery shopping, babysitting, dog walking, etc.). The critical thing is to be willing to accept help from others and tell them what you need.
Establish a Routine
A straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.
Hold a Family Conference
A formal meeting offers family members the chance to discuss the diagnosis and its likely progression, share caregiving responsibilities, and reduce misunderstandings and fears. It can help to have a member of the clergy, a professional care coordinator, or a trusted friend serve as an impartial moderator. Let everyone know they can play a role, even if they are a thousand miles away, and help you, the primary family caregiver, from bearing the brunt of all the work all of the time.
Prepare for the End
Planning for difficult decisions can make it much easier for the person with dementia and their family and caregivers to manage their healthcare, financial, and legal affairs. Start early, so that you can be part of the process and share your wishes with the people who may need to make decisions on your behalf. It is vital that you think through what to do if you should be incapacitated.