If you or a loved one has been diagnosed with Alzheimer’s disease or related dementia, it may be difficult to think beyond day-to-day. Over time, the symptoms of Alzheimer’s and related dementias will make it difficult to think clearly. Planning as early as possible enables you to make decisions and communicate those decisions to the right people.
The below issues are important to consider as soon as possible, while still in the earlier stages of the disease.
Learning about your condition
Before you begin planning after a diagnosis of early-onset dementia, it’s important to learn what might be coming down the road ahead. The two most important first steps include:
- Learning what type of dementia, you have
- Alzheimer’s is the most common form of dementia, but not the only one. To learn more please visit our page to understand different types of dementia
Researching different stages of dementia
Dementia is a progressive disease. In the early stages, it may not feel like much has changed. You’ll generally be able to take care of yourself, even with lapses in memory and changes to your normal mood or behavior. During the later stages, however, you will need support in most areas of life.
Establish a support system
Family, friends, neighbors, professionals, and your community are all part of your support system. Start building your team by identifying a decision-maker you trust. Often this person is a family member or friend. Have a conversation with this person about the type of help you may need and your long-term priorities.
The needs of your children
When older adults develop dementia, there’s a higher likelihood that their children are independent adults. It is important to make sure that your children understand what your diagnosis means and receive the information they need on ways your memory, behavior, and ability to communicate might change. This is even more important if one or more of your children will serve as caregivers.
Encourage questions, share what information you have, and seek out answers to what you do not know together. Your children should also be informed of your financial and future care decisions if age appropriate.
Most people who develop early onset dementia are not at the age of retirement. This makes considering your employment and financial situation after your diagnosis a must.
- Have medical documentation ready. Your doctor can provide an assessment of your current ability to work.
- Be honest about what your limitations might be moving forward, and how you plan to proceed with your employment as the disease progresses.
- Ask if there is an employee assistance program in place that might offer support.
- Learn more about your options regarding disability insurance, medical leave, and continuing coverage after you leave your job using COBRA.
Driving a car is an important part of living an independent life, particularly if they live in remote rural areas with no public transportation. Giving up driving can have a dramatic impact on how and where we live, as well as our freedom to do things important to our everyday lives. A person with dementia may have to give up driving immediately, or for a limited time after diagnosis.
Advance directives for financial planning are documents that communicate the financial wishes of a person. Financial planning must be created while the person with Alzheimer’s or related dementia has the “legal capacity” to make decisions on their own, meaning they can still understand the decisions and what they might mean.
- Three common documents are included in a financial directive:
- A will specifies how a person’s estate – property, money, and other financial assets – will be distributed and managed when they die. It may also address care for minors, gifts, and end-of-life arrangements, such as funerals and burials.
- A durable power of attorney names someone to make financial decisions when the person with Alzheimer’s or related dementia is incapacitated.
- A living trust names and instructs someone, called the trustee, to hold and distribute property and funds on your behalf when you are no longer able to manage your affairs.