How Health Care Professionals Can Help Alzheimer’s Patients and Their Family Caregivers

Alzheimer's affects 7 million U.S. adult creating significant challenges for families and the healthcare system. With 11 million family caregivers already providing support, concerns about dementia are growing, with Alzheimer's ranking as the top fear among retirees in a recent survey. Early detection and prevention through lifestyle changes, genetic counseling, and emerging diagnostic tools like blood tests are crucial. Physicians play a pivotal role in guiding families, emphasizing the benefits of dementia-trained home care professionals to ensure safety, maintain routines, and enhance quality of life. Early intervention and home care support can help families navigate the disease's progression while alleviating caregiving burdens.

About the Author: Sherri Snelling is a leading gerontologist, author, and expert in aging and caregiving. She is dedicated to educating and empowering families on promoting dignity, purpose, and well-being for older adults.

Today, 7 million U.S. adults are living with Alzheimer’s – a number expected to almost double to 13 million by 2050. These Alzheimer’s adults have 11 million family members are caring for them, which is why the concerns, fears and lack of knowledge around this disease, and brain health in general, is becoming more important for physicians and other health care professionals to understand to best help and support patients and their families.

A growing concern among many Americans is the fear of developing dementia or Alzheimer’s. In a 2021 survey, the findings showed 32% of retirees fear Alzheimer's the most, almost 11 points higher than those who fear cancer and 13 points higher than fears of contracting COVID-19.¹ 

In addition to the health concerns of many older adults, the financial strain on the health care system is significant. In 2023, the total national cost of caring for people living with Alzheimer’s and other dementias is projected to reach $360 billion increasing – with Medicare or Medicaid covering only 65% of these costs – to nearly $1 trillion in 2050 based on a growing older population where 1 in 3 people over age 85 will have dementia. And the financial impact on families is significant - the out-of-pocket costs for dementia care can be $360,000 for just three years of care where the average caregiving duration is 9 years.²

For these reasons, knowledge and information on dementia and Alzheimer’s is becoming an area where many primary care physicians and other health care professionals need to know not only the nature and progression of the disease but the long-term care supports and services that can aid families if a diagnosis is made. In addition, there is also more interest for younger and older patients to understand brain health and possible lifestyle choices that could prevent or delay a dementia diagnosis. While medical practices are focused on biology and physical aspects of health, a more holistic view of how psychosocial issues can affect patients is where many health care professionals can help patients and their family members.

Following are some of the ways in which physicians and other health care professionals can engage patients in understanding and managing normal cognitive decline versus dementia or Alzheimer’s. 

Diagnoses – Early Detection

Currently, 50-65% of people over age 65 who are living with dementia are undiagnosed. Studies show that most patients who do receive a diagnosis in their 70s and 80s, have been living with Alzheimer’s for 10-20 years. Subtle changes in memory, behavior and physical signs such as a slowed gait in walking, increased risk for falls, aphasia and language problems as well as other issues can be early warning signs. In addition, chronic loneliness and depression will also increase dementia risk.

For current patients, it is important health care professionals understand the Lancet Commission on Dementia report that has found more than 14 lifestyle factors including high blood pressure, obesity, sedentary lifestyle, smoking, air pollution increase risk for Alzheimer’s. If more healthy lifestyle behaviors were adopted, it is projected it could reduce Alzheimer’s cases by 40%.³

Both the Alzheimer’s Association and UsAgainstAlzheimer’s report 66% of those with Alzheimer’s are women and African Americans have a 2 times higher risk and Latinos a 1.5 times higher risk to be diagnosed than whites. The veteran population is also at higher risk – 49% rather than the 15% of the general population. 

Some are beginning to refer to Alzheimer’s as diabetes III. Studies have shown that patients with Alzheimer’s have neurons in the brain that are unable to process insulin. This insulin resistance (IR), which is similar to IR in diabetes II, is now a risk factor for Alzheimer’s. Another research study showed IR in menopausal women is a possible biomarker for future dementia risk (estrogen is a protective factor for aging in the brain of women).⁴

While lifestyle factors are part of the equation, family history may also be important. Approximately 5% of those with the APOEe4 gene have a genetic pre-disposition to Alzheimer’s, especially early on-set dementia, where are symptoms and diagnosis are made before the age of 65. In these instances, it is important to refer the family to a genetic specialist who can counsel on the pros and cons of genetic testing for other family members as they face an increased risk for developing the disease. 

For the majority of dementia, Alzheimer’s and mild cognitive impairment (MCI) patients, diagnosis used to be based on certain cognitive tests or a PET scan. But innovation in diagnostics is now introducing blood tests and cerebrospinal fluid tests that can identify biomarkers for the disease. 

The important reasons for earlier diagnosis are to offer patients the opportunity to participate in clinical trials and also benefit from the existing drug therapies that tend to be more effective when administered in the earlier rather than the later stages of the disease. In addition, many dementia patients benefit from living at home to receive care but families need support from experts in dementia care. Home care requires family financial planning that takes time and should be done in earlier stages so the dementia patient can still participate in that planning.

Beyond the Doctor’s Office – How Health Care Professionals Can Guide Families on Care at Home

Physicians and other health care professionals are in the best position to help patients and their families understand the progressive stages of dementia and what to expect. While most families want to keep their loved one at home as long as possible, the progressive nature and ongoing changes with Alzheimer’s makes this very challenging for family caregivers. However, with the aid of a home care professional, achieving dementia care at home throughout the stages of the disease is not only achievable but more beneficial for both the Alzheimer’s adult and the family caregiver.

According to Johns Hopkins Medicine, “Research shows that with the right supports, people with dementia can live at home longer and with higher quality of life compared to those living at home without coordinated support, and that this support may be most impactful when introduced early.⁵ 

With Alzheimer’s disease it is imperative to maintain routines especially in the early and mid-stages of dementia. As well, having a living environment that is familiar and comforting is equally important to help keep an Alzheimer’s adult calm from agitation and paranoia that can be associated with unfamiliar surroundings. As the disease progresses, more help from a dementia-trained home care worker is vital to address some of the aspects of the disease, such as physical outbursts or other unsafe behaviors, where family members may not have the knowledge or the 24/7 time commitment to provide to a loved one.

For instance, in the mid stage, 60% of Alzheimer’s adults will wander and the risk of falls increases as a person with Alzheimer’s has impaired balance and an unsteady gait. In addition, 6 in 10 Alzheimer’s adults will experience a condition called “sundowning” that creates paranoia, agitation and sometimes fearful outbursts or physical aggression. The expert help from a home care professional can help with these issues that can be unsettling for family caregivers. A home care worker can ensure a loved one gets a little exercise, such as walking or being outdoors in sunshine, into their daily routine – two ways to address balance issues and sundowning respectively,

In the last stage of the disease, the Alzheimer’s adult has progressed to a point that activities of daily living are severely affected and the ability to dress, bathe, groom and feed oneself are almost impossible. A person with late-stage Alzheimer’s will forget to eat or drink during the day causing significant weight loss and dehydration that can lead to other issues such as delirium. A home care worker can ensure an Alzheimer’s adult gets the nutrition and hydration needed.

Communication may also be difficult as aphasia – the inability to communicate, read or write – is part of this stage. Most communication will be done through body language and interpreting through a patient’s eyes whether they feel calm, fear, pain or other physical and emotional issues. The U.S. Surgeon General reported that 1 in 2 American adults are chronically lonely and this is more true of our Alzheimer’s population.⁶ Having companionship to rub lotion into your hands, brush your hair or simply sit with someone with dementia and listen to their favorite music helps address mental health issues such as loneliness and social isolation. It makes the difference in the life of the dementia adult as well as the family caregiver who can get a break but also get the support needed to best care for their loved one.

Physicians and other health care professionals can assuage some of the fear for family caregivers who do not know how best to deal with the issues associated with dementia and Alzheimer’s by referring them to a home care agency. This referral from a physician or health care professional is going to be trusted by families who may not know where to look or how to evaluate quality home care providers.

Comfort Keepers^® Can Help

Comfort Keepers^® provides uplifting in-home care that helps seniors thrive. Our specially trained caregivers, including dementia care, focus on developing genuine relationships with clients, keeping them physically and mentally engaged while ensuring they experience joy in their daily activities.

If you know a patient or family that could benefit from Comfort Keepers’ services, they can reach out for a free consultation. Let’s work together to help individuals age comfortably and confidently at home.

RESOURCES:

Alzheimer’s Association – Ten Early Warning Signs of Alzheimer’s
National Institute on Aging - Coping With Agitation, Aggression, and Sundowning in Alzheimer's Disease
Alzheimer’s Association – Wandering and Getting Lost
UsAgainstAlzheimer’s – a network of groups, such as AfricanAmericansAgainstAlzheimer’s, LatinosAgainstAlzheimer’s, WomenAgainstAlzheimer’s, etc. – that have support groups and consumer education about dementia. Also helpful for physician information on diagnostics and latest research.
Act on Alzheimer’s – a resource for health care professionals on dementia and Alzheimer’s care
BrainGuide – a resource where visitors can take an online survey to determine their cognitive health. While not a diagnostic tool, it was created to help consumers understand changes in their cognition and use the information to talk to their doctor. Assessments available in both English and Spanish.
ComfortKeepers.com: Respite Care: Providing Support and Relief for Dementia Family Caregivers

References

¹ The Harris Poll (January, 2021). The four pillars of the new retirement: Health, family, purpose, finances. Edward Jones and Agewave commissioned survey by The Harris Poll. Retrieved from: https://www.edwardjones.com/us-en/market-news-insights/retirement/new-retirement/four-pillars

² Alzheimer’s Association, (March, 2024). Alzheimer’s Association facts and figures report 2024. Alzheimer’s Association, Chicago, IL. Retrieved from: https://www.alz.org/alzheimers-dementia/facts-figures 

³ Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., ... & Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The lancet, 396(10248), 413-446. 

⁴ Nerattini, M., Jett, S., Andy, C., Carlton, C., Zarate, C., Boneu, C., ... & Mosconi, L. (2023). Systematic review and meta-analysis of the effects of menopause hormone therapy on risk of Alzheimer’s disease and dementia. Frontiers in aging neuroscience, 15, 1260427. 

⁵ Johns Hopkins Medicine blog. Dementia care: Keeping loved ones safe and happy at home. Johns Hopkins Medicine, Baltimore, MD. Retrieved from: https://www.hopkinsmedicine.org/health/wellness-and-prevention/safe-and-happy-at-home#:~:text=Research%20shows%20that%20with%20the,living%20residences%20are%20good%20alternatives.

⁶ Office of the Surgeon General. (2023). Our epidemic of loneliness and isolation: The US Surgeon General’s Advisory on the healing effects of social connection and community. Retrieved from: https://www.hhs.gov/about/news/2023/05/03/new-surgeon-general-advisory-raises-alarm-about-devastating-impact-epidemic-loneliness-isolation-united-states.html