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.
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 to 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 member.
- 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, back-up 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 that 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 the 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.
- Printable list of online resources
- Administration on Aging (AoA): The mission of AoA is to develop a comprehensive, coordinated and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities.
- Aging in the Know: A health care site created by the American Geriatrics Society Foundation for Health in Aging (FHA).
- AGS Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults (2012): A medication guidelines and recommendations site created by the American Geriatrics Society Foundation.
- alzheimers.gov is the government's free information resource about Alzheimer's disease and related dementias.
- Alzheimer's Association: The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and related dementias.
- Alzheimer's Disease Education and Referral (ADEAR) Center: The ADEAR Center website will help you find current, comprehensive Alzheimer's disease (AD) information and resources from the National Institute on Aging (NIA).
- Alzheimer Research Forum: The Alzheimer Research Forum reports on the latest scientific findings from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to contribute to the global effort to cure Alzheimer's disease.
- American Association of Retired Persons (AARP): The AARP is a consumer group that posts policy statements and position papers.
- American Geriatrics Society (AGS): AGS provides professional and consumer information.
- Assisted Living: Personal Care: This is a checklist from the National Caregivers Library of personal and health care questions to ask when you and your loved one visit an assisted living facility
- Assisted Living: Quality of Life: This is a checklist of questions from the National Caregivers Library dealing with socializing, meals, safety and other issues to consider when you and your loved one visit an assisted living facility.
- Assisted Living: Costs and Contracts: This is a list of financial questions to ask when you and your loved one visit an assisted living facility.
- California Advocates for Nursing Home Reform (CANHR): CANHR is a nonprofit advocacy organization dedicated to improving the choices, care and quality of life for California’s long term care consumers.
- California Alzheimer’s Disease Centers (CADCs): The CADCs effectively and efficiently improve AD health care delivery, provide specialized training and education to health care professionals and others, and advance the diagnosis and treatment of AD through a network of ten dementia care Centers of Excellence at California medical schools.
- California Caregiver Resource Center: Information, education, respite, care planning and support for families and friends caring for adults with chronic, disabling health conditions.
- CalQualityCare.org: This website provides information about long term care options and quality ratings for different providers in California.
- CaringBridge: CaringBridge provides free, easy-to-create and use websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.
- Caring Connections: Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
- Department of Health and Human Services Healthfinder: Health issues from food, safety, government health, prevention and self-care from children to seniors.
- Department of Motor Vehicles (DMV): Information about the DMV (of California).
- Family Caregiver Alliance: Caregiver resource center for brain impaired adults, support groups, education, care planning, research and advocacy.
- Medicare: Information about the federal health insurance program for people age 65 or older.
- National Institute on Aging: The NIA has many free publications
- Next Step in Care: Information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients with careful planning, clear communication and ongoing coordination.
- PayingForSeniorCare.com and Eldercare Financial Resource Locator Tool: this website helps families and caregivers locate information about long-term care resources for their loved ones and find the public and private programs available to assist in covering the cost of such care.
- PubMED: PubMed, a free service of the National Library of Medicine and the National Institutes of Health, includes approximately 20 million citations for biomedical literature.
- Social Security information: general information about social security, legislation, benefits and public information resources.
- UCSF Neurology Caregiver Corner: A listing of resources put together by a UCSF multidisciplinary group seeking to make information easily accessible for friends and family caregivers caring for someone with a neurological condition.
- UCSF Osher Center for Integrative Medicine: has a series of materials produced as part of the Caregivers Project to support family caregivers of loved ones with serious illness.
- Whole Brain Atlas: A primer on neuroimaging and anatomy.