Planning for Dementia Care
Get basic information about dementia, what to expect along your journey with this disease, and how to plan ahead for legal matters and the cost of care.
Dementia is a progressive and often irreversible neurological condition characterized by a decline in cognitive abilities, such as memory, reasoning, language, and problem-solving skills, to the extent that it significantly impairs an individual’s daily functioning and quality of life. Here are three immediate steps that should be taken to ensure your well-being and plan for dementia care:
Seek medical guidance and support
Establish a support network
Make legal and financial arrangements early on
It’s crucial to set up advanced directives, such as a durable power of attorney for healthcare and finances, and create a living will. You’ll also want to discuss long-term care options and financial planning to ensure the person with dementia’s needs are met as the condition progresses. Having a care plan that outlines preferences for living arrangements, caregiving, and end-of-life decisions will give you and your loved one peace of mind.
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Get support along your journey with dementia. Learn which steps to take at the time of diagnosis, and how to legally protect yourself and plan for care as the disease progresses.
There are many different types of dementia.
“Dementia” is an umbrella term for a variety of neurological conditions, including:
- Alzheimer’s disease
- Vascular dementia
- Lewy Body disease
- Frontotemporal dementia
- Alcohol related dementia
- Down syndrome and Alzheimer’s disease
- HIV associated dementia
- Chronic Traumatic Encephalopathy (CTE) dementia
While each underlying condition presents differently, there is one major symptom that is ubiquitous: a decline in brain function.
The early symptoms of dementia are subtle, and may not be immediately obvious.
If you or loved one is exhibiting several of these symptoms, you should consult a medical professional for a complete cognitive assessment:
Memory problems, specifically with remembering recent events
Reduced ability to concentrate
Disorientation, or difficulty finding your way around
Personality shifts, or behavioral changes
Apathy, withdrawal, or depression
Difficulty performing everyday tasks
Language problems, or difficulty understanding others
Difficulty judging distance or direction, especially while driving
It’s crucial to have the right legal documents in place for the future.
Those with dementia have unique legal needs.
Having the right legal documents in place will ensure that you or your loved one’s wishes are respected, and that legal and financial affairs are properly managed as the disease progresses.
Durable Power of Attorney (POA)
This document designates a trusted individual (often a family member or close friend) to manage the person with dementia’s financial affairs, including paying bills, managing investments, and making financial decisions. It’s crucial that the power of attorney is “durable,” meaning it remains in effect even if the person becomes incapacitated.
Advance Healthcare Directive
This legal document appoints a healthcare proxy to make medical decisions on the person’s behalf when they are unable to do so themselves. It may also outline specific healthcare preferences and end-of-life instructions, such as do-not-resuscitate (DNR) orders.
A living will, often part of the advance healthcare directive, provides written instructions about the type of medical treatment and interventions the person wishes to receive or avoid in specific medical situations. This document guides healthcare decisions when the person can’t communicate their preferences.
This document grants healthcare providers permission to share the person’s medical information with specified individuals, including family members and caregivers, which can be essential for managing their healthcare.
Financial Management Documents
Consider setting up arrangements for managing the person’s finances, such as joint bank accounts, trusts, or authorized signatories on accounts. These can help ensure that their financial needs are met even as their capacity to manage money declines.
Will or Trust
A will or trust specifies how the person’s assets and property should be distributed after their death. It ensures that their wishes are followed and can help prevent disputes among heirs.
Choosing the right decision maker is crucial for someone living with dementia.
Selecting a decision-maker, often referred to as an agent or attorney-in-fact, is a crucial decision for someone with dementia. You’ll want to choose someone you trust, and have a positive relationship with—you want peace of mind that your wishes will be respected. They should be available, local, and financially responsible. It’s also important to name a back-up decision-maker who can step in if your primary agent becomes incapacitated or is otherwise unavailable.
Planning for Dementia Care: The Impact on Caregivers
Caring for someone with dementia can be emotionally, physically, and mentally challenging, and caregivers often experience a range of burdens and stressors. Here are some of the burdens that caregivers of individuals with dementia commonly face:
Caregivers often experience a rollercoaster of emotions, including sadness, frustration, anger, guilt, and grief. Witnessing a loved one’s cognitive decline and personality changes can be emotionally draining.
Providing physical care for someone with dementia, especially in the later stages, can be physically demanding. Caregivers may need to assist with daily activities like bathing, dressing, and feeding, which can be physically taxing.
Many caregivers struggle to get adequate sleep due to the need for nighttime supervision, wandering, and disruptions in sleep patterns common among people with dementia. Chronic sleep deprivation can lead to exhaustion and compromised health.
Caregiving often comes with additional expenses, such as medical bills, home modifications, and caregiving supplies. Caregivers may also have to reduce their work hours or quit their jobs to provide full-time care, leading to financial strain.
The demands of caregiving can limit a caregiver’s ability to engage in social activities, maintain friendships, or participate in hobbies. This isolation can lead to feelings of loneliness and loss of support.
Caregiver burnout is a state of physical, emotional, and mental exhaustion that results from prolonged caregiving stress. It can manifest as a loss of interest in personal activities, withdrawal from social interactions, and a decline in overall well-being.
Caregivers are at risk of experiencing their health problems due to the stress of caregiving. Conditions like depression, anxiety, hypertension, and compromised immune function are common among caregivers.
Dementia-related behaviors, such as aggression, agitation, and wandering, can be difficult to manage and may pose safety concerns for both the individual with dementia and the caregiver.
Lack of Recognition and Support
Caregivers often feel undervalued and underappreciated, which can lead to resentment and frustration. They may also lack access to sufficient support, both in terms of respite care and emotional support.
Navigating a Complex Legal and Healthcare System
Caregivers may need to navigate complex healthcare systems, legal matters, and financial arrangements on behalf of the person with dementia, which can be overwhelming and confusing.
There are ways to pay for dementia care if the primary caregiver becomes unavailable.
Paying for dementia care can be a significant financial challenge, as the cost of care can be substantial. Here are some options and resources for financing dementia care, without spending down your life savings:
Long-term care insurance may cover some of the costs associated with dementia care, including in-home care, assisted living, and nursing home care.
Medicaid is a state and federally funded program that covers medical and long-term care costs, but qualifying for this government program requires advance planning—the time to start preparing to qualify for Medicaid is now!
Many individuals and families use personal savings, investments, and retirement funds to cover dementia care costs—but with advanced planning, you can avoid this.
We work with individuals and families on a regular basis to help put the right legal documents in place.
Planning for dementia care as early as possible will ensure you or your loved one receives the care they need, when they need it. From making sure the right powers are in place to preparing for the cost of long-term memory care, the attorneys at Miller Estate & Elder Law can help. Contact us today!