Americans of all ages value their independence, including older adults. Specifically, older adults value the ability to age in the place they call home rather than moving to higher levels of care. Older adults also value being able to make their own decisions, including where they live, how much healthcare to receive, how they spend their money, and preferences for who should speak for them if they are unable. Worsening dementia is a threat to the independence of older adults.
A common chronic disease, one in nine people over age 65 have been diagnosed with dementia. The rates increase with age: 5.0% of people aged 65 to 74, 13.1% of people aged 75 to 84, and 33.2% of people aged 85 and older have Alzheimer’s dementia.¹ With an aging population of baby boomers, the number of people living with dementia will more than double between 2014 and 2060,² with higher cases occurring among African Americans and Hispanics.³
While there are many causes of dementia, each one can have an impact on many aspects of life. Dementia can affect the brain and can alter how a person functions across several areas, including:
- Cognition – memory, language, attention, visuospatial orientation, higher executive tasks
- Behavior/psychiatric – mood, hallucinations, delusions, apathy, social skills
- Motor – slowness, tremor, rigidity, change in walking
- Other symptoms – disturbed sleep, dizziness, constipation
While there is no cure for dementia, those in healthcare now understand the progression of the condition. As dementia worsens over time, an individual will need help from others for tasks to maintain independence. Higher functioning tasks are called instrumental activities of daily living (IADLs). If support can be arranged on a daily or weekly basis, a person can remain at home.
IADL deficits include:
- Transportation – can no longer drive, negotiate public transportation, or maneuver independently in and out of a rideshare
- Housekeeping – laundry, vacuuming, dishwashing, etc.
- Keeping track of paying bills and managing money
- Shopping for and preparing meals
- Medication management – taking the correct pills on time every day and managing refills
Further worsening of dementia can result in a person no longer being able to manage their personal needs and needing some assistance throughout the day, including having a support person available 24 hours a day. If this cannot be arranged, the person may be moved from home to a care environment to provide these supportive services of activities of daily living (ADLs), which include:
The role of ensuring people with dementia have their IADL and ADL care needs met is done by their caregiver, yet many people do not identify with this role. They may simply be providing a ride to a friend or neighbor to run errands; taking over paying the bills for a parent; keeping track of medications; or doing the weekly laundry for a sibling. Over time, the demand on caregivers can grow as dementia worsens. The caregiving tasks may later include support for the ADLs by assisting with dressing, bathing, toileting, transferring from bed to chair, and dealing with incontinence. Without a coordinated plan, caregivers can experience stress1 resulting in burnout. The employed caregivers for those living with dementia were more often taking time off or showing up late, cut their hours, turned down promotions, lost company benefits, and retired earlier.1 If burnout occurs, the person living with dementia may be at risk of neglect or placement into a higher level of care.
How do we protect Brain Health and maintain independence?
A possible three-pronged approach—preventing dementia, supporting declines in function, and supporting caregivers—is presented below.
May and June mark the 10th Anniversary of the National Plan to Address Alzheimer’s Disease,4 the federal strategy for reducing the burden of Alzheimer’s disease and related dementias (ADRD). The Advisory Council on Alzheimer’s Research, Care, and Services, was established to advise the Secretary of the U.S. Department of Health and Human Services (HHS) on work conducted or needed regarding Alzheimer’s disease and related dementias (AD/ADRD) and provide recommendations for the National Plan on a yearly basis. The 2021 plan update includes a new goal: Accelerate Action to Promote Healthy Aging and Reduce Risk Factors for AD/ADRD.4
We are unable to change some factors that increase the risk of dementia, such as age, race, and family history; however, the Lancet Commission identifies several modifiable risk factors for dementia that together account for 40% of dementia cases.5 Having four or more risk factors greatly increases the risk of people responding yes when asked if they experienced worsening or more frequent confusion or memory loss in the previous 12 months.6
Several dementia risk factors can be addressed by focusing on having a healthy heart: physical activity, abstaining from smoking, maintaining normal blood pressure, and controlling diabetes. A recent study further shows hypertension can affect brain structure and function in a manner that increases the risk of cognitive decline and dementia.7 The study found significant reductions in mild cognitive impairment through aggressively lowering systolic blood pressure.7
Many resources are available to support this effort, including:
- Mind Your Risks Campaign8 – targeting blood pressure control in Black men aged 28–45
- CDC High Blood Pressure9 – public and health professionals’ resources
- Healthy Brain Resource Center10 – a roadmap for health systems and communities
- Brain Health Academy11 – Continuing Education credits (CE) for clinicians
Supporting Declines in Function
A pattern of loss of functional abilities in people living with dementia usually starts with the loss of the IADLs, which may be noticed by the person who seeks assistance or by a close family member who then steps in to provide the support or arranges for the service. Support at this level is either voluntary and private pay, or in some situations, transportation and housekeeping may be provided from federal or state programs based on eligibility. If members of the support system are made aware of the losses in function, often the family and friends can piece together coverage to support the IADL losses. To locate resources, the Eldercare Locator12 can connect you with local Area Agency on Aging (AAA). This is a free resource that will conduct an assessment and provide vetted vendors.
As the stage of dementia progresses, the person begins to lose functions in the ADL skill set. These tasks are more labor-intensive and needed throughout the day. On a short-term basis when someone is discharged from the hospital or nursing home, Medicare may cover support for these services. A common misconception in the public is that because the person has a continued need for support for ADLs, Medicare will cover the services; however, Medicare does not cover long-term support for ADLs. This level of support is covered by state Medicaid waiver programs or Programs for All-Inclusive Care for the Elderly (PACE)13 if the person meets certain criteria.
Another form of coverage for these supports is Long Term Care (LTC) insurance, which is lower in cost when purchased at a younger age. Some employers offer LTC as a company benefit for purchase, while other larger groups, like AARP, offer plans. Unfortunately, most people who need this level of support do not have the insurance and do not qualify for state-subsidized programs. When those resources are not available, private pay or caregivers fill in the need. Caregiver training is essential for both parties in this relationship. Several evidence-based caregiver training programs occur online, in groups, or for individuals. The local AAA can be an excellent resource to find one that fits the caregivers’ preferences. Additional online resources to aid in learning how to care for a person with dementia are Alzheimers.gov,14 National Institute on Aging,15 and the AARP – Family Caregiving: Care at home.16
Those taking on the role of caregiver for a person living with dementia are often unprepared for the role. While the caregiver may initially begin to provide support for IADLs, as the person’s dementia progresses, the caregiver will need to support ADLs. Caregivers providing ADL support may not have received any training in providing this level of service in a safe manner. If the person living with dementia is not comfortable with the caregiver in this role, they may exhibit mild or severe behaviors—crying, yelling, resisting, fighting, etc. When caregivers face resistance to the task, they do not know how to interpret or address the resistance, which can be very stressful. Caring for the caregiver is very important to reduce burnout.
Caregiver training is essential for both parties in this relationship. There are several evidence-based caregiver training programs that occur online, in groups, or for individuals. The local AAA can be an excellent resource to find one that fits the caregivers’ preferences. Other online educational tools to support the caregiver include:
We are living in a community with a growing number of people living with dementia. It is valuable to everyone to ensure all people can live, age, and thrive in day-to-day living. Steps can be taken to ensure every aspect of the community knows how to provide a supportive environment for people at all stages of dementia. Communities include banks, stores, healthcare systems, libraries, law enforcement, transportation, housing, etc. Dementia Friendly America (DFA)20 is a national network of communities, organizations, and individuals seeking to ensure communities across the United States are equipped to support people living with dementia and their caregivers. Is your community preparing?
For more information about resources for older people and people with disabilities in the Metro Atlanta area, check out our Search for Services feature, or explore the Empowerline website to be connected with services & counseling. This article was originally posted on Rainmakers Strategic Solutions.