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Dementia and Healthcare Decisions: Planning Ahead

When it comes to planning for future medical care, advance directives are a vital tool. These legal documents allow individuals to outline their wishes for medical treatments if they can’t communicate preferences. Having an advance directive ensures that your healthcare choices are respected and followed. For those diagnosed with dementia, this planning becomes even more crucial. 

 

What are advance directives? 

Advance directives are documents that tell what kind of medical care you want even if you cannot tell people at the time. There are two types of legal forms that may be included: 

1. Living wills. A living will outlines what common medical treatments you do or do not want. Examples of the treatments that might be included are cardiopulmonary resuscitation (CPR), feeding and hydration through tubes, and ventilation (breathing machine). 
2. Durable Power of Attorney for Health Care (DPOAH). A DPOAH names a person to make medical decisions on your behalf if you cannot make them for yourself. Sometimes, this document will also include details about your preferred choices or goals as well. 

Often, people will include Do-Not-Resuscitate (DNR) Orders with their advance directives. This document specifies if you want to be revived if your heart stops. All of these documents ensure your healthcare decisions are honored – even if you can no longer communicate them yourself. 

 

Key questions in planning with dementia 

Dementia is a progressive decline in cognitive abilities, which means over time individuals may not have the capacity to make decisions. But dementia does not mean that individuals will never be able to make decisions for themselves again. Still, for people diagnosed with dementia, planning is important. Advance directives can: 

• Provide clear guidance. As dementia progresses, your ability to make decisions may diminish. Advance directives can offer clear instructions for caregivers and medical professionals, ensuring your preferences are continuously honored. 

• Alleviate family stress. Making decisions about medical care and living arrangements can be overwhelming for loved ones. Advance directives remove the guesswork, guide decision-making, and provide peace of mind. 

• Ensure your wishes. With a documented plan, you can be more confident that medical care will aligns with your values and preferences throughout your dementia journey. 

Advance care planning involves thinking about choices, talking about goals, and writing down preferences. Those diagnosed with dementia may also want to ask themselves the following five questions. 

1. What are my goals for medical care based on dementia level? Dementia progresses through various stages and focus of care may evolve. It’s helpful to consider ahead of time what care goals you would want based on the stage of dementia. Clearly defining medical wishes at mild, moderate, and severe levels of the disease helps ensure ongoing care is tailored to your updated preferences. 
2. How do I want mental health care addressed as dementia progresses? People with dementia may experience depression, anxiety, apathy, hallucinations, and psychosis as well as feeling lost and vulnerable. These issues can make it difficult to remember things, enjoy life, and engage with others. Mental health care can help people with dementia manage their emotions and improve their quality of life 
3. Where do I want to live throughout my dementia journey? Whether you wish to stay at home, move to assisted living, or explore other options, pre-determining your living arrangements can set up realistic expectations and financial planning. Between 30–40% of adults with dementia in the United States live in long-term care and about 70% of people with dementia spend their last days in a nursing home. 
4. What will my relationships look like? Dementia doesn’t change a person’s need for love and affection, but it can change many aspects of a relationship. Caregivers and family may need to find new ways to express feelings, communicate needs, or provide affection. 
5. Are there cultural or religious beliefs important to my dementia care? Research has shown that when their religious or spiritual needs are not met, people with dementia are at greater risk for spiritual distress, depression, lower quality of life, increased anxiety, and greater physical pain. Cultural and religious values can impact treatment decisions and care practices. 

Advance directives provide clarity and ensure that your care aligns with your values and preferences – especially for those dealing with dementia. For additional resources, the Advance Directive for Dementia and Compassion in Choices both deal directly with end of life planning for those with dementia. Pay it forward to your future self and loved ones. 

Source: IlluminAge AgeWise with information from NIA; Alzheimers.gov; Alzheimer’s Society; NCBI; and NHPCO.