Navigating the challenges of dementia

Dementia is not a specific disease, but rather a general impairment of cognitive functioning such as thinking, remembering and reasoning. This loss of mental ability is often chronic and progressive and not associated with any altered consciousness, but is severe enough to interfere with normal activities of daily living.

Changes in memory, mood, thinking, and daily behaviors should raise suspicion for dementia.

Worldwide, approximately 50 million people have dementia, with almost 10 million new cases per year. The proportion of the population aged 60 and older with dementia is estimated between five and eight percent at any given time.

Dementia affects individuals differently, but signs and symptoms can generally be grouped into  three stages. As its onset is gradual, early dementia may be overlooked. Common symptoms include forgetfulness, losing track of time, and becoming lost in familiar places.

Signs that suggest dementia has progressed to middle stages include becoming forgetful of recent events  and people’s names, becoming lost at home, needing help with personal care, having increasing difficulty with communication, and experiencing behavioral changes, including wandering and repeated questioning.

The late stage of dementia is marked by inactivity and almost total dependence—becoming unaware of the time and place, having difficulty recognizing relatives and friends, having an increasing need for assisted self-care, having difficulty walking, and experiencing escalating behavioral changes, especially aggression.

Diagnosis

Dementia is not easy to diagnose or manage. Those with dementia may have to visit different types of specialists for proper diagnosis. It is paramount to get the right information regarding how to live with an illness with no current treatment to alter its progressive course and no cure.

When seeking diagnosis or support for loved ones with dementia, the initial contact should be your primary care physician, who will likely order a variety of tests, including blood analysis, tests for cognitive ability, brain scans, neurological assessments, and mental health evaluations.

Be clear that no one specific test can diagnose dementia.

Care

Principal goals of dementia care include identifying any underlying medical condition as the source of symptoms, early diagnosis, optimization of physical health and well-being, and recommendation of specialists to lighten the burden for patients and caregivers.

The following specialists may be involved in your care:

• Neurologists: physicians who specialize in the abnormalities of the central nervous system and brain. They are able to interpret brain scans.
• Geriatricians (not necessarily medical professionals): providers who specialize in the social, biological and psychological aspects of aging. They may help to offer essential support services to people with dementia.
• Geriatric psychiatrists: They focus on emotional and mental problems of the elderly. They can assess thinking and memory.
• Neuropsychologists: They conduct tests related to memory and thinking.

Choosing the right specialist

Ask your primary care physician for a referral.

Ask friends and acquaintances who are also caregivers to direct you to a specialist, research dementia care centers, and reputable senior living communities in your region.  Get several referrals and compare who will best serve your and your loved one’s needs

After a potential referral has been identified, research the professional and check her/his credentials, including Board certifications and office policies. Make a cold call to the office to  determine efficiency and listening capabilities. If impressed, schedule a one-on-one meeting.

Other concerns:

Accessibility (especially important during the pandemic): feasibility, ease and convenience of transportation to various appointments; open communication lines between patient, caregiver, and health care professional as well as between health care providers; opportunities for virtual visits; coordination of care

Costs: Remember to evaluate for insurance coverage of various fees and services of health care providers. If using cash, determine if within budget.

Continuity of care: Trust your gut. Be comfortable and confident with your choices.

Other opinions: Feel free to seek second, third and fourth opinions, and do not be intimidated if you have to change health care providers or practitioners if she/he no longer meets your needs.

Communication: Write your questions and concerns down during your office visits. Find providers who speak your language and are sensitive to your religious or cultural  convictions.

Self-care: Seek long-term support groups for the caregivers. These are challenging periods for all  involved. Caregivers must remember to take care of themselves, stay informed, and welcome support.

Sharon Luster Dykes, MD, FACS, FASCRS is a dual board-certified colon and rectal surgeon. She owns her independent surgical practice, Minnesota Colon and Rectal Surgical Specialists. She earned her Bachelor’s and Medical Degrees from Brown University and completed General Surgery Residency and Colon and Rectal Surgery Fellowship at the University of Minnesota. She currently serves as a Senior Oral Examiner and a Written Examination Committee member for the American Board of Colon and Rectal Surgery.