Learning that someone you care about has been diagnosed with Alzheimer’s or other related dementia can be life changing. Coming to terms with the diagnosis requires time. Immediate reactions of denial and fear are normal and may help you and the person diagnosed process the grief you are feeling.
Perhaps you tried to encourage the person living with dementia to learn about their diagnosis, only to be told “nothing is wrong.” Perhaps you may have been hesitant to learn more yourself for fear of the future. Whatever the circumstance, accepting a diagnosis of Alzheimer’s disease or a related dementia requires time to absorb information about the disease before you might be ready to learn more.
It is not unusual for care partners to be the first people to seek information about the disease soon after diagnosis. Knowing what to expect and having access to the resources and support available can be empowering and lead to an increased commitment to your partner and determination to get through this together.
Allowing time to process the diagnosis is an important first step to adjust to this “new normal.” The process of acceptance is just as important for the care partner as it is for the newly diagnosed person. No two people deal with the diagnosis in exactly the same way. There is no right approach and some days may be more difficult than others, but don’t be discouraged.
Allowing yourself time to grieve and mourn over the current and future losses you and the diagnosed person may experience can be healthy. The sooner you are able to accept the diagnosis, the better suited you will be to help the person living with dementia move closer to acceptance too.
Individuals with the disease acknowledge that while it often takes time to accept their diagnosis, specific actions initiated by the care partner help in this process.
Patience, flexibility and open communication can provide reassurance that the person with the disease does not have to face their diagnosis alone. For many, the simple reinforcement from their care partner that “we are in this together” is the most memorable act of support.
Consider these tips to help the person in the early stage of the disease come to terms with his or her diagnosis:
- Provide time for the individual to feel sad about how his or her identity is changing as a result of the diagnosis.
- Emphasize the roles and responsibilities that are still significant to the individual’s identity, i.e. grandfather, mother, daughter, etc.
- Encourage the person to speak with a trusted friend, minister or even a professional counselor, to talk through difficult emotions.
Telling others about a diagnosis of Alzheimer's or dementia can be one of the most difficult steps for people diagnosed in the early stage and their care partners. There may be anxiety surrounding who to tell and concerns about social stigma.
Sharing the diagnosis with others can open up new relationships and connections to people you did not realize were willing to support you. For others, hearing of the diagnosis may test relationships and some friends and family may react with denial, or pull away in ways that reflect their misconceptions about Alzheimer’s disease.
Yet, it can be empowering to share the diagnosis with others. Be open with friends and family about the changes that are taking place. Educate them on the disease and tell them how they can be supportive.
A diagnosis of Alzheimer’s or other dementia is often accompanied by uncertainty around one’s identity and life purpose. New challenges presented by living with the disease — including stigma and misperceptions — can cause the person to question his or her capabilities and, in turn, his or her identity. It’s not uncommon for a person living in the early stage to ask the question “Who am I?”
One way for people in the early stage of the disease to move beyond the loss of identity is to find ways to engage in activities that bring meaning and purpose to their life. For some, this means exploring skills they already possess, while others may choose to engage in new activities that bring a fresh sense of purpose.
Finding a new purpose can help confirm that Alzheimer’s does not have to define a person; it only becomes a part of who they are. Consider the tips below to help the person in early stage find meaning and purpose:
- Discuss what brings meaning and purpose to his or her life.
- Encourage the person to stay involved in activities he or she enjoys.
- Consider activities you can do together.
- Work together to identify opportunities at home or in the community that can leverage his or her strengths and interests.
- Discuss what new activities the person may be interested in trying.
- Encourage the individual to get connected with others who are living with the disease to learn what they are doing to remain active and engaged in life.
A diagnosis of Alzheimer’s or dementia is life-altering for both the person living with the disease and family and friends.
You play an important part in providing support to the person who has been diagnosed. Along the way, you will need the support of others, too.
Often times, care partners look to family and friends first. Once you’ve identified trusted friends or family members, be specific about how you would like to engage their support. This can be assistance with transportation to or from medical appointments, help with social outings or simply having someone to talk with.
There are also community programs, support groups and online social networks that provide the opportunity to learn from others who have a friend or family member with dementia.
We often hear care partners say that they are looking for support from people who "really understand because they've been there, too."