A dementia diagnosis can be a challenging and emotional time for the person diagnosed as well as their family and friends. Unfortunately, this is a common scenario for many individuals. The World Health Organization states that 55 million people live with dementia worldwide, with 10 million new diagnoses yearly. According to the National Institute on Aging, those diagnosed with Alzheimer’s disease and other forms of dementia often experience a loss of short-term memory, inability to make sound judgements, difficulty with communication, understanding and expressing thoughts. As dementia progresses, its symptoms often interfere with a person’s daily life and activities. After diagnosis, it is common to experience a wide range of emotions which vary from person to person.
What to Expect After a Diagnosis
For some adults, getting a diagnosis can be a long process. Noticing symptoms, scheduling appointments and tests can be an emotional journey. According to the Alzheimer’s Association, it's likely you or your loved one may feel on or all of these emotions at some point.
- Denial. You may hope that the person is not ill, expect them to get better, convince yourself that the person has not changed or attempt to rationalize problematic behavior.
- Anger. It is easy to become frustrated with your loved one, resent the demands of caregiving, resent family members who cannot or will not help provide care or experience feelings of abandonment.
- Guilt. Grief can also take the form of acceptance. You may learn to live in the moment, find meaning in caring for someone with a progressive disease, understand how grief has impacted you and appreciate the personal growth that comes with surviving loss.
- Acceptance. Acceptance can manifest as a vital aspect of the grieving process. It encompasses the ability to embrace the present, discover significance in providing support to someone grappling with a progressive illness.
- Sense of Loss. Realizing the direction of their life is not what they had anticipated can cause them to grieve over plans they have lost.
- Isolation. Diagnosis can easily make them feel alone and different from those around them.
Processing the diagnosis can take some time. However, as you or your loved one accept the diagnosis, you may find new ways to move forward while cultivating a fulfilling future. As you work through the diagnosis, it’s important to find new ways to support yourself or your loved one both emotionally and physically.
Sharing the Dementia Diagnosis with Family and Friends
It’s completely normal for your loved one to be hesitant about sharing their diagnosis with friends and family. However, as the disease progresses, it’s important to have a support system in place before they even need it. Telling family and friends will allow them to build their support system early and on and will enable them to face challenges more easily. Remember, they don’t have to tell everyone at once. They have the ability to choose who they want to tell and how to tell them. Here are a few tips to help you and your loved one share the news when they’re ready:
- Think about who you and your loved one want to share the diagnosis with first. You may choose to tell those who they feel closest to or who they spend the most time with.
- Choose those who they want to be supported by as the disease progresses.
- Go slowly. Sharing the diagnosis can be emotional. You and your loved one aren’t obligated to talk about everything in one sitting. This can happen over time.
- Take educational brochures with you to begin your conversation. This can be a great way to learn about the disease with those who will be supporting your loved one.
- Let people support your loved one, but also be sure to tell them how your loved one wants to be supported. If they want to be supported in certain ways, like help with doctor’s appointments, grocery shopping or cooking meals, it’s important to express this to friends and family.
Supporting a Person with Dementia
Your loved one might experience a wide variety of emotions after their diagnosis. They may feel relief after receiving an answer for their symptoms, but they might also develop feelings of grief and loss as their condition progresses. This can be a difficult time for your loved one, but there are also small things you can do to show your support, according to the Alzheimer’s Association:
- Keep the person involved. It’s not uncommon for those with dementia to feel a sudden loss of independence. It’s important to keep your loved one involved in decisions about their health, finances and what happens after death. Keep in mind, it’s essential to have these conversations during the first stages of the disease.
- Give the person time to express how they’re feeling. As the disease progresses, your loved one will need to find other ways to express themselves. Those with dementia often find creative expression a great way to communicate their feelings nonverbally. Crafts, music, and art can all be productive ways of expression.
- Support their interests. Keep in mind many activities and hobbies can be adapted to fit the needs of your loved one as their condition progresses. You might also consider helping your loved one find new activities that they enjoy.
Living with Dementia at Inspīr
We know how difficult it can be to receive a dementia diagnosis. At Inspīr we offer resources and support to assist you as you gain perspective and come to terms with the diagnosis. Our Oceana program offers full-service dementia care and personalized wellness-focused programming.