By Carolyn Clevenger, RN, DNP, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN
Dementias caused by Alzheimer’s disease and other disorders, like Lewy body, frontotemporal or vascular dementia, are among the most frightening illnesses facing seniors. Nearly 7 million Americans are currently affected by dementia, and 11 million family members or friends provide unpaid care for these individuals.
Dementia brings unique challenges to the person and the whole family — needs that aren’t always met by traditional health care models. Currently, there is no conclusively effective drug treatment. Family caregivers need resources and services to support their important role as informal, front-line health care workers.
Health care for people living with dementia should offer regular assessments of cognition, behavioral symptoms, self-care abilities and caregiver strain. As a gerontological nurse practitioner (NP) and dementia care specialist, I provide primary care exclusively for people living with dementia, in partnership with their caregivers, at the Integrated Memory Care program. This is a unique, comprehensive dementia care model that provides care and services to people living with dementia and their care partners.
Principles of good care include respect for the person and their current capacities, creating spaces where they can thrive and focusing on optimizing cognition for as long as possible.
Remember, safety is a paramount concern. Dementia illnesses gradually erode individuals’ capacities to appreciate the consequences of their actions. To start, I advise families to focus on four main safety issues:
- Driving: If a person’s ability to drive is unclear, an evaluation by a certified driving rehabilitation specialist may be needed. A dementia diagnosis does not equate to giving up driving, but modifications may be needed.
- Medication: Family monitoring for medication adherence is important. Too many pills — or too few pills — are both dangerous. Pill organizers or pill reminder systems can be very helpful.
- Finances: Providing account access to a trusted person can be a helpful safeguard to prevent or address financial disasters. People living with dementia can fall victim to scams, and no one wants to outlive their resources.
- Firearms: Firearms should be stored separate from ammunition — ideally in a locked cabinet that requires combination access. Consider disabling or selling firearms or pass them to the next generation.
Absent effective medications, many things can improve a patient’s experience living with dementia. The heart is connected to the brain, so control high blood pressure. It is also critical to address diabetes, vitamin or hormone deficiencies and sleep apnea. Attention to basic daily healthy lifestyle approaches, like good sleep and nutrition, are great for all of us and have a potentially larger payoff for someone living with dementia. Finally, a consistent, structured routine goes a long way when thinking and memory are impaired.
Supporting the caregiver of a person living with dementia is potentially the most effective treatment available. I strongly recommend classes and support groups for dementia family caregivers. These are often provided by community-based agencies; some clinical practices—like ours—also provide them. There is also a wealth of credible material available, including blogs, podcasts and books — some of which is specific to the underlying brain disease associated with dementia. This information is available online or in print.
Sadly, it is also a good reminder to avoid scams that masquerade as research. Credible sources for potential research participation may be funded by the National Institute on Aging. Avoid any over-the-counter supplement promising brain health or research trials that expect participants to pay for services.
Supporting someone living with dementia may be accomplished by listening carefully, respecting their input, creating spaces where they can thrive and optimizing cognition for as long as possible. Consult an NP or other health care provider if support is needed for someone living with dementia or their caregiver.