Health Care Planning Following a Diagnosis of Dementia
Progressive forms of dementia, including Alzheimer’s disease, allow the individual diagnosed with the disease to participate in the planning of their care. In last month’s edition of Life Navigator, we looked at financial and legal considerations one should make following the diagnosis of dementia. In this month’s article, we turn our attention to the planning that should be carried out to ensure the individual’s health care needs are met, and their wishes are honored throughout the progression of the disease.
Sound Financial Planning is the Foundation for Medical Planning
The average life expectancy following the onset of dementia symptoms is between eight and ten years; however, some individuals have lived for another 20 years following their diagnosis. Due to the length of the disease, practically every part of the person’s life will be impacted, making the need for planning exceptionally critical. The first step, following a diagnosis of dementia, is ensuring an individual’s finances, and estate are in order and properly protected. The Genworth 2016 Cost of Care Survey found the median cost for an assisted living facility was over $43,000 per year while the annual cost of nursing home care was nearly double that amount. Additionally, expenses can include the costs for medical treatments, medications, doctor and specialist visits, home medical equipment and potentially in-home care. Sound financial planning will help individuals and families make realistic arrangements for medical care throughout the progression of the disease.
Beginning the Health Care Planning Process
Perhaps the most important step an individual and their family can take following the diagnosis of dementia is to take the time to learn about the progression of the disease. During interviews led by Dr. Karen Hirschman to understand factors that facilitated or hindered advanced planning, a common theme emerged from those who had advanced planning conversations: they wished they could go back and have more detailed conversations about the specifics of treatments, such as the use of feeding tubes and medications, or living situations. Working with a knowledgeable expert on the disease, or a patient advocate can help facilitate the conversations necessary to answer questions about future care decisions.
Understanding Advance Directives
There is no shortage of advice on the Internet regarding advance directives. However, before any legal documents are created and signed, it is important to ensure the person diagnosed with Alzheimer’s or dementia has “legal capacity.” Generally speaking, legal capacity means the individual signing the documents can understand the consequences of their actions and the ramifications that signing the document will have on their life. The process for determining legal capacity can vary from state to state; it is therefore best to consult with an expert before signing any documents.
Durable Power of Attorney for Health Care
Unlike a regular Power of Attorney (POA) which expires when a person becomes incapacitated, a Durable Power of Attorney remains in effect when the person with dementia is no longer able to make decisions on their own. These decisions can include selecting doctors and other health care providers, determining which types of treatments the individual will receive if the individual should be placed in a care facility and at the end of the disease. It will also allow the POA to make end-of-life decisions such as giving do-not-resuscitate instructions.
The gravity of these decisions is immense and can be difficult for families to make. Early and thorough conversations can avoid inner family conflicts and provide assurances to the POA they are making decisions in accordance with the individual’s wishes. Living wills are a good tool to help guide a POA in their decision-making process.
A living will is only valid while a person is alive and is different from a will. While a will directs the distribution of assets following one’s death, a living will provides direction on how care decisions should be handled once the individual is no longer capable of participating in their own care. This document ensures an individual is able to retain their legal ability to control their medical decisions. Furthermore, this document can remove the uncertainty a Durable Power of Attorney for Health Care may face and can prevent family discord when difficult decisions must be made. As discussed earlier, working with a professional or patient advocate can help ensure a living will is as comprehensive as possible.
An Action Plan
An individual diagnosed with Alzheimer’s or another form of dementia can expect to live for another eight to ten years. During that time, they will be confronted with numerous decisions about their health care. Once the disease has fully robbed them of their ability to make decisions, such decision making will fall to others. By creating advance directives, one can ensure their preferences for care are honored while not leaving their family members with the uncertainty of how they would like care decisions made.
As soon as possible, the following steps should be taken:
- Speak with an expert or patient advocate to understand the medical decisions that will be faced as dementia progresses.
- Ensure financial affairs are in order so care can be paid for as needed.
- Create or update advance directives, including the living will and durable power of attorney for health care.
- Review and update legal documents as necessary.
Next month, our feature article will look at how caregiver stress can be managed while caring for a loved one with dementia. If you are not receiving our newsletter, sign up here so you don’t miss next month’s article.