Receiving a dementia diagnosis can lead to a lot of questions, especially about the next steps and how to prepare for what’s to come. Because dementia typically gets progressively worse, it is important to plan now for the type of care you want, who you want to make medical decisions on your behalf, and how you are going to pay for care. 

Health Care Planning

Senior citizens relax in a nursing home

When planning for your care, it is important to first know what your options are. Care options for a person diagnosed with dementia can include care provided by a family member, care provided by a home health agency, or living in a memory care facility. If you are considering having a family caregiver as your primary care plan, it is important to have those conversations well in advance of when you may need their help. You do not want to just assume a family member can care for you without actually speaking with someone about it. 

When planning for the type of care you want, you will also want to consider how your wishes may change depending on the severity of dementia. For some people, they may want to stay home while their dementia is still considered to be mild but then moved to a memory care facility if their dementia has progressed to be considered severe and no longer want to ask their family to care for them at that point. 

Within our Letter of Guidance to Your Health Care Agent, we have added a series of Dementia Scenarios to make it easier for our clients to outline their wishes. While someone in their 40s may not want to think about the possibility of having dementia years down the road, the fact remains that 1 in 3 seniors dies with Alzheimer’s or another form of dementia, so these are situations we all need to think about and plan for.

Medical Decision-Making

A Health Care Power of Attorney allows you to name the person or people (your agent(s)) that you want to make your health care decisions if you are unable to make those decisions yourself. The Health Care Power of Attorney provides specific powers for what healthcare and medical decisions your agent has authority to make in the event that you become incapacitated. 

However, we do not recommend only having a Health Care Power of Attorney as most people that have served as a health care agent for a loved one express how stressful it was and how uncertain they felt about their loved one’s wishes. This is why we supplement the health care power of attorney with a HIPAA Authorization, a Living Will, a Letter of Instruction to your Health Care Agent, and a Personal Care Plan. 

The HIPAA Authorization is recommended to ensure that your family doesn’t get the “silent treatment” due to cumbersome HIPAA medical privacy laws. 

Our Living Will (also sometimes called an Advanced Directive) differs from other types of living wills in that it addresses multiple potential end-of-life scenarios and allows you to specify under each scenario treatments that you would or would not want ranging from treatments that are considered by most to be quite invasive to non-invasive treatments like antibiotics and simple diagnostics. 

The Letter of Instruction to Your Health Care Agent provides you with a tool to think through other potential healthcare scenarios including your thoughts regarding surgery, chemotherapy, alternative or experimental medicine, right-to-die laws, family visitation, dementia directives, and long-term care wishes. 

The Personal Care Plan document is something we have developed to allow you to tell future potential caregivers about you as a person. We ask you to specify your preferences for all the things that can be easy to take for granted while we’re healthy but can suddenly become important if you can no longer express your wishes. 

Long-Term Care Planning defines long-term care as “a range of services and supports you may need to meet your personal care needs. Most long-term care is not medical care, but rather assistance with basic personal tasks of everyday life, sometimes called Activities of Daily Living (ADLs)…Other common long-term care services and supports are assistance with everyday tasks, sometimes called Instrumental Activities of Daily Living (IADLs).”

Long-term care planning is the process of developing a plan for both your care and how to fund it. Long-term care for someone diagnosed with dementia can refer to around-the-clock care in a memory care facility, but it could also refer to full-time in-home care whether it be from a family caregiver or someone with a home health agency.

With the need for long-term care comes the expense of long-term care. You can begin planning now to hopefully lower the burden when the disease progresses to needing long-term care. The total lifetime cost of care for someone with dementia was estimated at $377,621 in 2021.  

When planning for paying for long-term care, you will want to consider both private and government resources as options for paying for care. Private resources can include:

Government resources can include:

When considering utilizing government resources to pay for care, it is crucial to pay close attention to the qualification requirements for the program(s) you may want to utilize. For example, Medicare does not usually pay for long-term care, but Medicaid does. However, you must qualify to receive Medicaid benefits as Medicaid is a needs-based program. Intending to use Medicaid benefits later on often requires its own planning

We Can Help You Develop a Long-Term Care Plan

Having assisted many clients with long-term care planning, our team at Carolina Family Estate Planning understands that developing a long-term care plan is not just about protecting your own independence and dignity, but also protecting those you love from the physical, emotional, and financial toll that caring for a loved one can take.

We’ve helped many clients take an interdisciplinary approach to their long-term care planning by exploring both legal and financial options. Usually, a well-rounded long-term care plan will involve a combination of legal, health care, and financial tools to meet your goals and maximize your protection. 

For more information, sign up for our free seminar If the Diagnosis is Dementia: What It Means & What You Need to Know, and give our office a call at 919-443-3035. 

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