Dementia: What to Do After Receiving a Diagnosis
Dementia affects every aspect of a person's life. Ability Central shares the essential first steps after receiving a diagnosis.
By Ability Central
29 March, 2023
After receiving a diagnosis of dementia, it is vital to prepare for worsening symptoms. This article will discuss the five steps in preparing for the future.
- What legal and financial decisions need to be made after receiving a diagnosis of dementia?
- What is the impact on mental health after a dementia diagnosis?
- Why is establishing a routine important for a person with dementia?
- Who should be on the care team?
- Where can I find more information to better understand the diagnosis of dementia?
What legal and financial decisions need to be made after receiving a diagnosis of dementia?
Legal and financial discussions are difficult to initiate, but they are essential while the person with dementia still has the legal capacity to participate actively. Legal capacity is the ability to understand and appreciate the consequences of one's actions and to make rational decisions. As dementia progresses, the loved one may no longer meet the criteria.
The first step is to collect legal and financial documents to understand what is already in place. Then, families should discuss their approach, what they want to happen, and which legal documents they will need.
Legal documents to consider should include the following:
- A power of attorney allows the person to name someone else to make financial and other decisions when necessary.
- A power of attorney for health care allows the person to name a health care professional to make health care decisions when you are no longer able.
- A durable power of attorneyfor finances/property allows the person to designate another person to make decisions about your finances when you are no longer able.
- Physician Orders for Life-Sustaining Treatment (POLST) is a medical form that specifies the types of life-sustaining treatment you do or do not want.
- A living will lays out the medical treatment desired near the end of life, including life-prolonging treatments.
- A standard will provides information about how your estate will be distributed.
- A living trust pools financial resources into one place and provides instructions for handling those finances.
For more information on the specifics of legal documents, see the Alzheimer’s Association website.
The National Institute of Aging also has a downloadable checklist called “Getting Your Affairs in Order: Advance Care Planning.”
What is the impact on mental health impact after a dementia diagnosis?
People with dementia often experience a wave of emotions after receiving a diagnosis of dementia. The feelings may include all of the following:
- Anger at the loss of control
- Denial of the accuracy of the diagnosis
- Relief that there is a cause behind the symptoms they have been experiencing
Help Guide International has a variety of suggestions to help walk through these emotions, including:
- Understanding what the diagnosis means for you
- Discovering who the “new you” is
- Building your care team
- Finding ways to control the aspects of your health and life that you can control
To understand the mental health challenges of caregivers, see Dementia: Planning for Long-term Care.
Why is establishing a routine important for a person with dementia?
Family members can help the person with dementia with day-to-day tasks, including money management, self-care, communication, transportation, medication, and building a care team.
The American Seniors Housing Association says the first step is establishing a routine. Daily routines are essential because routines:
- Help people with dementia navigate their world
- Add a sense of order to the days
- Often remain accessible even into the middle stages of the disease as short-term memory fails
This routine can include managing money and medication, self-care, and creating meaningful access to communication.
For more information on how caregivers can help with day-to-day activities, see Dementia: Warning Signs and Symptoms.
Who should be on the care team?
The care team consists of all the people working together to care for the person with dementia. Anyone who is actively a part of the person with dementia’s day-to-day life is considered part of the care team. Having a care team allows the person with dementia to continue living as independently as possible while being safe.
To start building the care team, the Alzheimer’s Association suggests:
- Identify which friends, family, and neighbors may be willing to help.
- Discuss the help needed. This help may include occasional wellness checks or transportation.
- Avoid people who seem judgmental, critical, or blaming.
- Do not take offense if someone declines to help.
- Show your appreciation regularly.
Over time, the person with dementia is likely to need full-time care. To learn more, see Dementia: Planning for Long-term Care.
Dementia and Alzheimer’s Disease
Dementia is a general term used to describe a loss of memory and other cognitive abilities that interfere with daily life and a person’s ability to communicate. Alzheimer's disease is a specific type of dementia that gradually worsens over time. It is a physical illness that damages the brain, leading to symptoms of dementia. While Alzheimer's disease is the most common form of dementia, there are many other types as well. However, it is important to note that not all dementia is caused by Alzheimer's disease.
Where can I find more information to better understand the diagnosis of dementia?
Ability Central has multiple resources to learn more about dementia, including:
- Dementia: 5 Quick Facts You Should Know
- Dementia: Warning Signs and Symptoms
- Dementia: Planning for Long-term Care