Dr. Daniel C. Potts is a neurologist sharing what patients and care partners should know about navigating the healthcare system after watching his father grapple with an Alzheimer’s disease diagnosis in 2002.
Diet and Exercise
You might know that a healthy lifestyle can help prevent dementia, but it is also recommended for those who already have the diagnosis. Ask your doctor about the brain-healthy MIND diet, a Mediterranean-based guide for eating that relies heavily on grains, fruits and vegetables, olive oil and lean protein like fish. Your doctor can also give you ideas for physical exercises that are safe for dementia patients. My philosophy is that some movement is better than none. Try to walk for at least 30 minutes per day, even if that means breaking it down into smaller increments.
Mental Health
In addition to physical health, patients’ mental health should also be looked after. Dementia is often accompanied by apathy, which can thwart cognitive-preserving activities like exercise. If your loved one is having a hard time getting motivated, or is developing balance issues associated with dementia, ask the doctor to consult physical or occupational therapists. Working with a therapist for a few sessions may jump-start an interest in increased physical activity. Speech therapists may be consulted to provide cognitive rehabilitation training, swallowing assessments and help in overcoming some of the challenges of aphasia (language disturbance that results in trouble finding words and is common in most types of dementia).
The Importance of Sleep
Sleep patterns often change leading up to and after an Alzheimer’s diagnosis. Studies have shown that monitoring a dementia patient’s exposure to light can help regulate sleep. If trouble sleeping goes beyond odd hours, it’s time to seek a specialist. Untreated obstructive sleep apnea can cause brain changes like those seen in Alzheimer’s disease, with accompanying cognitive impairment. If care partners notice your loved one is snoring loudly, gasping for breath after respiratory pauses, or exhibiting other signs of obstructive sleep apnea, ask for a referral to a sleep specialist.
A Safe Environment for Caregiver and Patient
Helping people live well with dementia includes providers giving guidance on issues of safety, such as driving, firearms, falls prevention, wandering and other environmental safety issues. Care partners must make providers aware of any threats to safety so that they may be addressed. Ask your healthcare provider how to obtain GPS devices if wandering risk is significant, and request a formal driving assessment by physical therapists to objectively determine whether restriction is indicated. If driving restriction is needed, physicians should take the lead, as this can be a very difficult and divisive issue for families.
Planning for Assisted Living and End-of-Life Care
Healthcare providers and their staff should offer guidance through those stressful transitions that characterize the progressive nature of dementia: living at home to adult day care or assisted living/specialized dementia care, short-term care to long-term care, and finally, palliative care and hospice. Ask providers what they would do if the patient were their own loved one. Questions like this can take the interaction to a more personal level where mutual trust and sharing fosters healing.
Provider, Patient and Care Partner Relationships
I know a care partner who wrote a one-page life story of her husband that she could share with professionals at each transition: likes, dislikes, former occupation, noteworthy accomplishments—information that would typically not be found in the medical record. She found that staff appreciated this snapshot of the person for whom they would be providing person-centered care. I recommend creating and sharing such a document.
I have learned a lot from being a physician and a care partner. The provider/patient/care partner relationship should be one that is built upon trust, honest communication, mutual respect and compassion, though sadly, this is not always the case. Most importantly, now more than ever before, I believe in the power of personhood and relationships to carry you through this journey.
This is part three of a three-part series on what to expect with a dementia diagnosis. Read part one here and part two here.
