You (or a loved one) has just been diagnosed with Alzheimer's disease or another memory disorder. What do you do now? How do you prepare for the months and years ahead?
After a diagnosis of dementia, it's important to take proactive steps for treatment, legal planning, and support to ensure the best quality of life for both the patient and their caregivers, according to Gerard Kerins, MD, a geriatrician with Yale New Haven Health and associate clinical professor of Geriatric Medicine at Yale School of Medicine.
“As the disease progresses, it will be very helpful if you and your caregivers are prepared for the challenges that arise,” he said.
Next steps after diagnosis
Educate yourself. Dr. Kerins recommends gathering information about the disease and its progression and staying updated about new research and resources. “You should learn as much as you can so you can have some control over decisions about care and treatment while you still understand what is involved,” he said.
Communicate with healthcare providers. Discuss with your healthcare provider what to expect and how to manage symptoms. “There is no natural progression that applies to every patient, and there are nuances that make it difficult to predict,” Dr. Kerins said. “However, you can prepare a list of questions to ask your healthcare provider about the diagnosis, treatment options and what to expect in the future.”
Communicate with family members/caregivers. Dr. Kerins recommends talking openly with family members and loved ones about your diagnosis, care preferences and future plans. “Discussing your wishes and expectations with others can help make sure everyone is on the same plage so you get the support you need,” he said.
Plan for the future. “Taking things one day at a time isn’t the best approach to this,” said Dr. Kerins. He recommends consultation with an expert(s) to discuss various financial and legal plans. Advance care directives such as a living will and durable power of attorney will outline your wishes for future medical treatment and appoint someone to make decisions on your behalf when/if you are unable to make them. A financial adviser will help to organize and manage expenses related to long-term care.
“Your care needs will change over time as the disease progresses. So review and adjust your financial and legal plans regularly,” he said.
Maintain a support network. According to Dr. Kerins, it’s important to maintain social connections and participate in activities that promote cognitive function. “Stay engaged,” he said. “Too often people pull back from social interactions, which can be isolating in the long run. Be upfront and honest with others about what you are going through.
Support groups for individuals with dementia and their families/caregivers provide practical advice and emotional support. Community resources and local services are also available. For the most up-to-date information about support groups, contact Infoline by calling their toll-free hotline at 2-1-1.
The Alzheimer’s Association is another resource for help and support.
Be aware of treatment options. “There is no cure for Alzheimer’s. But you should be aware of what’s available to you right now so that your expectations are realistic,” Dr. Kerins said. Ask your doctor which treatments are available and recommended, and inquire about clinical trials that you may be eligible to participate in.
The Alzheimer’s Disease Research Center at Yale School of Medicine offers information about research and clinical trials that may be helpful.
Monitor symptoms as the disease progresses. Start any recommended treatments or medications that may help manage symptoms – and schedule regular appointments with healthcare providers so they can monitor your condition and adjust care as needed. “As the disease progresses, many patients may experience agitation, depression, anxiety and sleep issues. Keep your healthcare providers informed because they may be able to offer interventions that can help with any new symptoms,” he said.
Ensure and promote safety. Statistics show that falls are the leading cause or injury or death for adults ages 65 and older – and the risks for those with dementia are even higher. After an Alzheimer’s diagnosis, it’s important to remove household hazards that could lead to falls and injuries.
“Dementia affects cognitive abilities, memory, coordination, balance, memory, strength and depth perception,” Dr. Kerins said. “Patients with Alzheimer’s and other forms of dementia have difficulty adapting to change, understanding instructions and making informed choices, so it’s vitally important to maintain a safe environment.”
Read more: Tips to make your home safer
Help, care and support at Yale New Haven Health
The Dorothy Adler Geriatric Assessment Center at Yale New Haven Hospital, one of the oldest and most comprehensive geriatric assessment programs in the United States, is an outpatient consultative service that evaluates patients with age-related problems — medical, psychological, cognitive and social — that affect daily living. A multidisciplinary staff comprised of geriatric physicians, psychiatrists and social workers works with patients who have Alzheimer’s disease and other types of dementia as well as their families to provide optimal care and coordinate connections to appropriate community services such as home health care agencies, adult daycare centers and volunteer support groups. Call 203-688-6361 for more information.
Learn more about resources and services at Yale New Haven Health.
