How to Help Alzheimer’s Patients Enjoy Life After Diagnosis
If you know a friend or family member who has been diagnosed with Alzheimer’s or any other form of dementia, the idea of their identity slowly slipping away can be one of the hardest parts of the disease to cope with. After all, Alzheimer’s is the illness that Americans fear the most—even more than cancer, stroke or heart disease.
But research suggests that a decline in memory or ability doesn’t necessarily correlate with a decline in happiness or quality of life, and it doesn’t mean you’ve completely lost your loved one. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life until the illness’s final stages.
“Initially, when it is diagnosed and the patient is aware that they are getting more forgetful, they can tend to get more unhappy or frustrated,” says Aparna Kotamarti, M.D., a geriatrician on the medical staff and medical director of the Senior Health & Wellness Center at Texas Health Fort Worth. “But as it progresses they typically are unaware of their memory issues and are happy in their world. It’s more the caregiver that suffers, seeing their loved one ‘slip away’ mentally.”
Peter Rabins, Ph.D., a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, says about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe progression of the disease.
“I’ve learned something from this,” Rabins says. “I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”
As you and your loved ones begin to work through emotions that come with diagnosis, don’t lose sight of the treatment options available for dementia and Alzheimer’s disease. Dementia is a progressive disease. Some people progress slowly and others quickly, but it typically progresses over a seven to ten-year period.
“Usually when patients and their families come to see me, they already suspect the possibility of dementia,” says Kotamarti. “They are somewhat psychologically prepared for the diagnosis, so when they get a confirmation, they are less afraid or angry and more determined to see what they can do to help their condition.”
There are multiple ways that caregivers and friends can improve the life of someone who has been diagnosed with Alzheimer’s or dementia. Here are some elements of their quality of life that should be attended to:
Promote Social Connections & Adapt Communication
“It’s important for both individuals with the disease and their caretakers to maintain relationships with each other and friends,” says Badia Harlin, a nurse practitioner at the Senior Health & Wellness Center. “Continue doing the activities you enjoy together, and each person should be open and honest about how they feel regarding the diagnosis and the disease.”
Kotamarti says just spending time with your loved one can help create a positive quality of life.
“Meet with them, check on them and love them,” she says. “Make a schedule of friends and family coming and visiting with them on a regular basis. Don’t let them be forgotten.”
As the disease progresses, it can become difficult to know how to communicate with the person affected. Here are some suggestions to ensure you’re communicating as efficiently as possible:
- Speak slowly, clearly and calmly
- Make one or two references at a time
- Allow enough response time, before clarifying
- Avoid negative words and don’t argue
- Eliminate noise or distraction
- Make eye contact, but don’t stare
- Express affection by smiling, holding hands or giving a hug
Focus on Well-Being
It is reported that up to 40 percent of people with Alzheimer’s disease suffer from depression.
“Depression from the diagnosis and loss of independence is a real thing,” Kotamarti says. “The support system in place should do their best to stay patient, compassionate and empathetic. As far as possible, allow them to be independent with regard to basic activities of daily living with supervision. Socialization, faith and love can go a long way to help with depression.”
Kotamarti adds that your loved one’s doctor should do a depression evaluation to make sure it is identified and treat appropriately, improving their quality of life.
Address Any Unmet Needs
In a study published in 2013, Rabins and colleagues identified several needs that are most commonly unmet: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).
Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, try to understand the underlying cause and do something to remedy it.
A dementia or Alzheimer’s diagnosis is not easy for anyone involved, and there is definitely not a step-by-step guide on how to deal with it. Learning how the disease progresses as well as creating a strong relationship with your loved one’s physician can help you understand what you might be able to expect.
For additional support, the Alzheimer’s Association 24/7 Helpline provides access to highly trained staff, day or night. Whether you need help understanding dementia, want to discuss medication and other treatment options, or need a care consultation from a master’s-level clinician, the Helpline serves people with memory loss, as well as caregivers.
If you’re struggling with a loved one’s dementia diagnosis, the Senior Health & Wellness Center can provide a coordinated approach to his or her care. To learn more, call 1-877-THR-WELL (1-877-847-9355) or visit TexasHealth.org.