Receiving a diagnosis of dementia can be frightening for the patient and for their loved ones. If the disease is diagnosed in the early stages, there are things you and your loved one can do to mitigate the effects while they are still able and ensure they have a voice in their care.
One of the most frightening things about a dementia diagnosis is fear of the unknown. Combat that by helping your loved one gather information about the different types of dementia, how they manifest themselves, and what to expect at different stages of the disease. Check with your loved one’s doctor for references they would recommend. A lot of information also is available online, just make sure you are using a reputable source, such as the Alzheimer’s Association (www.alz.org), which has a host of informational resources. The National Institutes of Health (www.nia.nih.gov/alzheimers/publication) also publishes several fact sheets and free booklets with information about Alzheimer’s disease and other dementias.
In the early stages of dementia, the signs and symptoms may not be apparent to anyone except those closest to your loved one. They will continue to function independently, possibly for years after their diagnosis. One of the most important things you can do at this stage is to provide love and support. Enable them to share their fears and concerns about the future, or even vent their anger about the diagnosis.
Assist your loved one in developing cues and reminders to help with memory. Sticky notes, labels and calendar planners will become valuable tools in helping your loved one retain their independence.
Cognitive decline will occur with dementia, but it won’t happen immediately. Take this time to help your loved one investigate resources and providers for people with dementia in your community, so they know what is available before they need it. Make sure to keep your loved one involved and truly listen to their opinions and preferences for care, so you know how to proceed when care is needed. Your local area agency on aging can point you in the right direction, or explore resources in your area through the Eldercare Locator (www.eldercare.gov). If friends or colleagues have cared for a loved one with dementia, ask them what resources and care providers they used and would they recommend those?
Ask your loved one who they would want to help them with different tasks, such as bathing or dressing, if they should need it. If the answer is always “you,” suggest other friends or family members who could help out with some things.
Don’t limit planning ahead to issues of health care and day-to-day caregiving. Encourage your loved one to get their financial and other affairs in order while they are cognitively able to do so.
This article was authored by leading experts in aging and also The Benjamin Rose Institute on Aging, a nationally recognized leader addressing the most important issues of aging through service, research and advocacy.