No one ever plans to be sick or disabled, but everyone should create at least a basic version of the legal documents (advanced directive, will and durable power of attorney) that specify your wishes about the type of care you receive at the end of your life and how you want your property dispersed after your death. Care issues become even more important when facing a debilitating disease like dementia. Talking about these plans may make you uncomfortable or seem irrelevant if you're young, but the earlier you start, the better off you and your loved ones will be. You will have more time to think about what you really want. These documents can be updated and changed over time as needed.
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Preparing for the End
Legal, financial and health-related planning is something all of us ought to do, regardless of our health status. These documents define how you want to be medically cared for in case you are not able to speak for yourself. People often assume that their loved ones know their end of life plans but have never had a discussion about it. In our experience, families are always grateful that they dealt with these difficult questions early on, rather than at the last minute.
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Legal Planning
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Financial Planning
The rate of decline differs for each person with dementia. One person may lose the ability to handle money matters or make competent business decisions at an early stage; another may retain these skills much longer. Regardless, people with younger-onset dementia and their families often face increased medical costs, lost jobs and income, and financial risk due to the behavioral symptoms that can lead to impulse buying or susceptibility to scams. Furthermore, the caregiver may have to reduce or give up work in order to care for the person with frontotemporal dementia.
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Medical Planning
Much of medical planning is covered by legal planning, but you may still want to discuss care issues with your doctor and loved ones to be sure your wishes are clear. Autopsy is another consideration. It can be a comfort by providing a positive diagnosis and invaluable to medical scientists trying to understand dementia and improve diagnosis and treatment. Generally, both end-of-life care and autopsy can be performed with regard for your religious and cultural beliefs.
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Resources for End of Life Planning
For more detailed information on these topics:
- American Bar Association: the voluntary professional association of American lawyers
- California Coalition for Compassionate Care: a statewide partnership of over 60 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California
- Caring Connections: a program of the National Hospice and Palliative Care Organization (NHPCO) that provides downloadable state-specific living will and healthcare power of attorney forms. Along with their website they also offer a free helpline at 800-658-8898.
- Compassion and Choices: a nonprofit organization working to improve care and expand choice at the end of life. They provide support and counsel, local referrals, assistance with legal planning and advocacy through their Client Support Services (accessible online or by calling 800-247-7421).
- End-of-Life Decision-Making: a helpful fact sheet from the Family Caregiver Alliance that answers a number of common questions and links to other resources.
- End of Life Issues: a series of articles from the National Caregivers Library discussing general end of life issues, funeral planning, grief and loss, as well as hospice care.
- Legal and Financial articles: from CareGuide@Home
- Legal Issues in Planning for Incapacity: a question and answer on legal issues from the Family Caregiver Alliance
- National Academy of Elder Law Attorneys: a non-profit association that provides information, education, networking and assistance to those who deal with legal services to seniors and people with special needs
- Nolo: Law books, legal forms and legal software written in plain-English
- List of estate planning attorneys, financial planners and CPA planners by US state from the National Care Planning Council
- Talking about Your Final Wishes: An article with advice on how to start talking about what you want to happen when you or a loved one dies.
- AARP: AARP's homepage for end-of-life issues provides resources on financial and medical planning
- Growth House: This site is a portal to reviewed resources on life-threatening illnesses, end-of-life care, death with dignity, eldercare and suicide
- HospiceNet: The Hospice website is for patients and families facing life-threatening illnesses. They offer resources for both patients and caregivers. Their "Hard Choices for Loving People" article, written for those making medical decisions on behalf of loved ones, is of note.
- Your Life, Your Choices: A comprehensive workbook designed to assist patients and family members with developing advance directives
- Caring Conversations: This workbook from the Center for Practical Bioethics helps you approach difficult conversations with loved ones on end-of-life planning
- Five Wishes: From Aging with Dignity, an accessible workbook that helps you document your medical, personal, emotional and spiritual wishes. Five Wishes meets legal requirements under the advance directive statutes in all but 10 states.