When Dementia Strikes Early
Getting a correct diagnosis takes time
Living with Early-Onset Dementia
The same year the group’s report came out, the Alzheimer’s Association launched the national Early Stage Initiative. Town hall meetings were held around the country between July 2007 and May 2008 in order to learn about experiences and perspectives on early-stage dementia. A Virtual Town Hall was launched as well, to give those unable to attend the opportunity to participate online. It’s the first nationwide discussion about Alzheimer’s by people with the disease, and the results were published in a report in August 2008, Voices of Alzheimer’s Disease.
Because so many people with early-onset Alzheimer’s participated, their perspective is strongly represented in the report. Many of their comments may help others struggling to cope with a disease that hit early and unexpectedly:
- The process of getting a diagnosis was described as prolonged, difficult, and often extremely frustrating. Tests were lengthy, draining, and in some cases, demoralizing. Said one participant, “Healthcare professionals need to take us more seriously and most of all listen to our questions and concerns. Don’t just shove another pill at us to get us out of the office—treat us as if we were their mother, father, sister, or brother.”
- They felt abandoned and became isolated after the diagnosis. Instead of leaving the doctor’s office with a prescription and a “come back in six months” comment, they said more should be done to direct the person to the care community.
- Their age puts them in an unusual position. The 2006 report noted that most services are targeted to the over-65 group, and those who responded to a survey said that “they do not fit in and feel uncomfortable with these services.” They want support groups and adult day programs specifically designed for younger people, and they want help for their families. Caregivers complained that existing information and programs didn’t meet their needs. The 2008 report noted that their younger age often disqualifies them from clinical trials.
- Anticipating upcoming dependence upon others was upsetting. The balance between the challenges they experience and a strong desire for independence is difficult. “I am not incapacitated and I don’t want to be treated as though I can’t be trusted to do things,” said one person.
- They don’t want to have things taken away from them until it is absolutely necessary. This includes driving—a touchy subject—which some were unwilling to give up and insisted they did well. They want to focus on what they can do, not what they can’t.
- They expressed the need to remain involved, active, and responsible for as long as possible. “Don’t, through the kindness and goodness of your heart, take us out of the decision making, because it’s use-it-or-lose-it,” said one person. Said another, “I’m still the same person—treat me the same way. Talk to me the same way. Include me in the conversation as you would before.”
- They were concerned that their condition, and the stigma associated with it, separated them from other people and from the lifestyles that others their age were experiencing.
- For many, relationships are the biggest frustration. Friends stopped seeing them, they were excluded from conversations, and they were treated differently, as though they were incompetent. Said one person: “Once you have the label of having Alzheimer’s, there’s a subtle kind of loss of credibility that takes place. I was on the board of directors for our homeowner’s association, and when it became public that I have Alzheimer’s, almost anything I brought to the table got put away. It was not direct—it was sort of managed behind the scenes.”
- As relationships and abilities change, an overpowering feeling of isolation takes over, and people with dementia seek connections and support from others in the same situation. If you can’t talk on the phone very well, use email for your conversations. Connecting online has become a popular way to get support. Consider journaling, whether online or on paper.
- Understand that other people are not going to sense what you need: you need to tell them what you can and can’t handle. Tell them you can’t handle noisy restaurants or multitasking, for example.
- Don’t deny the unknown economic issues facing you. Move to a smaller home, if necessary, and make other adjustments to the reality of your situation.
- Advocate for yourself as well as for others with dementia. Educating public groups, friends, and family about dementia can help reshape the perception of the disease and can be personally therapeutic. Said one participant, “You’ve got to be willing to step forward, let people know you have the disease, and just speak out, because if we don’t speak out now when we can, nobody is going to speak for us later in life.”
Minding Our Elders Blog