Steps To Take After a Dementia or Alzheimer’s Diagnosis

An Alzheimer’s or dementia diagnosis in a loved one can bring many emotions. Shock and dread are common as families consider an unknown future. Relief is surprisingly frequent, too, as suspicions are confirmed, and it becomes time to take action. Many family members feel confused and overwhelmed, unsure where to start getting their affairs in order. This article will walk you through the next steps now that your loved one has a dementia or Alzheimer’s diagnosis so you can feel confident as you embark upon your journey.

Long-term care planning after a dementia or Alzheimer’s diagnosis

Because dementia worsens over time, patients eventually need long-term care as the disease progresses. Long-term care can be provided in multiple settings. Your loved one can remain living at home for as long as it is safe for them. If they need help, family members can help care for them, or home care services can offer the necessary support. Some home care providers may offer specialized at-home dementia care. When the home care provider is not with your loved one, you can consider adult day care programs or respite care to give family caregivers a break in their caregiving duties.

If your loved one can no longer live at home, moving to a senior living community can allow them to access the care they need. Assisted living can be a good option for a person who may need some help with activities of daily living but can maintain some independence. An adult foster home can offer similar types of support but in a smaller setting than assisted living, which may better suit your loved one’s preferences. A nursing home may be a better fit for a person who needs significant help managing many activities of daily living or chronic medical conditions that require skilled nursing care. 

Some senior living communities offer memory care services, which could be important to your loved one’s care as the disease progresses. These services are catered toward individuals with Alzheimer’s disease or other forms of dementia to meet the specific cognitive, physical, and emotional challenges that come along with the disease. Senior living communities may have memory care wings in the buildings, or you may even find a stand-alone memory care community for your loved one. These communities focus on providing care solely to individuals with memory care needs.

The right option for your family depends on many factors and may change over time.

What to consider in long-term care planning

• Which settings could meet your loved one’s needs for a safe, therapeutic environment with opportunities for social interaction and meaningful activities?
• What kind of at-home Alzheimer’s and dementia care would you need to meet your loved one’s medical and care needs at home? 

Here are some next steps for thinking about long-term care planning

• Learn about your options for memory care.
• Start touring care communities in advance, if possible.
• Evaluate your home safety. Checklists are available online, but a professional assessment may be beneficial.

Health care planning after a dementia or Alzheimer’s diagnosis

Start a conversation about future care wishes as soon as possible after a dementia diagnosis so your loved one can participate to the greatest extent possible. It can feel difficult to talk about, but these conversations bring peace to all involved. As medical events occur and decisions must be made, they’re invaluable to guiding the decision-making process. Resources are available online to help guide these conversations.

What to consider for your health care planning

These decisions are very personal, and your loved one may not have the answers right away. Here are some questions to consider in this decision-making process:

• What makes for a good quality of life?
• What are the goals of care (length of life vs. quality of life)? 
• Which health challenges is your loved one most likely to face in the years to come?
• Would they want CPR, intubation, or other advanced but traumatic lifesaving measures?

Next steps in your health care planning

• Ask your loved one about their wishes for future care. 
• Complete advance directives (living will) and a medical power of attorney.
• Complete HIPAA authorization forms for each health care provider.
• Learn why hospitalization is so hard on people with dementia.
• Learn about medication safety in dementia and how to identify and reduce side effects.
• Learn about fall safety and take steps to reduce the risk of falling.
• Ask the doctor about medical order forms (such as a practitioner order for life-sustaining treatment or a do-not-resuscitate order) if advanced lifesaving measures are not desired.

Legal and financial planning

Your loved one will need support with day-to-day finances and planning for future financial needs. Long-term care expenses can add up, so your loved one will want to ensure they have the funding available to pay for care services they will need in the near future and down the line.

Legal and financial considerations after a dementia or Alzheimer’s diagnosis

Working with your loved one to plan the legal and financial aspects of their future is ideal. Decisions and actions about your loved one’s finances and legal matters are extremely difficult without their signature and consent. It’s important to finalize as many of these documents and decisions as possible. Here are some of the considerations you should take into account when it comes to your loved one’s legal and financial situation:

• What is their financial situation, including income, savings, investments, and debts?
• What financial support might they be eligible for through government benefits?
• If they have long-term care insurance, what limitations exist on their policy?
• What home modifications might be necessary?

Next steps for legal and financial planning

• Establish consent to manage legal and financial affairs with a durable power of attorney for finances (or general durable power of attorney).
• Consult with a long-term care planner to determine your best options for paying for memory care and other needs.
• Learn how to manage money for a person with dementia or hire a professional bill-pay service or money manager.
• Take steps to protect your person from scams and fraud.
• Create a personal care agreement for any caregiving duties.
• Consult with your tax professional regarding tax considerations of caregiving.
• Review life insurance policies and financial accounts and update beneficiaries as needed.
• Ensure a will or trust is complete.
• Make final arrangements for funeral services and cremation or burial.
• Gather important documents in a safe place and ensure a trustworthy person can access them if needed.

Caregiver planning

Planning to become a caregiver is discussed much less often than legal, financial, and advance care planning, but it’s just as important.

Supporting someone with dementia requires more energy as time goes on. At first, they may not need much support. However, it adds up, slowly draining energy reserves. Family members often find they’re sacrificing much more of their needs than they realized to support their loved one and may experience caregiver burnout. 

At the same time, dementia increasingly affects a person’s abilities and behavior, especially when they have unmet needs. It can be hard to tell what someone with dementia needs because communication becomes challenging. Tough emotions and tricky situations become more frequent. Falls, medical events, emergencies, and close calls become more common.

Many family members don’t think of themselves as caregivers until they’re exhausted, and their options are limited. By taking action now, you can drastically alter your caregiving experience (and your loved one’s experience of needing care). It will likely still be challenging — but much less so than stumbling through unprepared. 

Caregiving considerations

• What can be done to ensure everyone’s physical, mental, emotional, and social needs are consistently met over time?

Next steps for caregiver planning

• Develop a good self-care plan that realistically enables you to meet all your needs.
• Learn about behavior and communication in dementia online, in family caregiver training classes, or from a dementia care coach or geriatric care manager.
• Start developing a sound support system of friends and professionals who can provide practical assistance and help you navigate tough times.
• Look into helpful ways to manage sharing caregiving duties with others. Use a care coordination app to share care tasks with others.

As emotionally complex as a new dementia or Alzheimer’s diagnosis can be, experts agree: You’re in a better position now that you know. You’re able to start planning and building support systems. This puts you in a powerful spot. The caregiving journey is a lot different with the right support. Supporting someone with dementia is a marathon, and getting ready for it empowers you to set up a sustainable and rewarding experience.