The number of persons living with Alzheimer’s disease and related dementias (ADRD) in our communities is rapidly on the rise. Many are living with caregivers who do not have the necessary education and support to provide adequate self-care and social engagement for the person with dementia and to prevent behavioral outbursts, falls, injuries, or individuals from getting lost. These caregivers are seeking help and expressing feelings of significant stress, which affects their quality of life and the quality of life of the person with dementia. As such, there is a significant need to support our persons with ADRD in the communities and to educate caregivers, families, the public, and providers.
The newest Facts and Figures 2012 [PDF] from the Alzheimer’s Association states:
- One in eight people age 65 and older (13 percent) has Alzheimer’s disease.
- Nearly half of people age 85 and older (45 percent) have Alzheimer’s disease.
- An estimated 60 to 70 percent of older adults with Alzheimer’s disease and other dementias live in the community.
- Sixty-one percent of family caregivers of people with Alzheimer’s and other dementias rated the emotional stress of caregiving as high or very high.
- By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 6.7 million—a 30 percent increase from the 5.2 million age 65 and older currently affected.
- By 2050, the number of people age 65 and older with Alzheimer’s disease may triple, from 5.2 million to a projected 11 million to 16 million, barring the development of medical breakthroughs to prevent, slow, or stop the disease.
These statistics suggest that support and education for persons with ADRD and their caregivers in the community are needed NOW, and the need will only increase.
Frequently, persons with dementia display behavioral outbursts, including agitation or resistance to care, making it more difficult for the caregiver. These behavioral outbursts are often a form of communication, expressing such things as fear, pain, or unmet needs. The person with dementia loses her ability to articulate needs through speech, but continues to communicate through behaviors.
In order to prevent or minimize these outbursts, caregivers need the education and training to adapt the environment and to use appropriate communication techniques and approaches when providing care. Understanding the person with dementia and providing the appropriate approaches can make a measurable difference in the medical management of the person with dementia and the functional performance of the person, as well as reduce caregiver burden.
These approaches can facilitate more independence and quality of life for the person with ADRD, as well as prevent falls, injuries, and hospitalizations. Home health providers are in a unique position to provide this teaching of caregivers of Medicare beneficiaries who meet the criteria for home health services.
This teaching and training has been specifically supported by Palmetto GBA, the Home Health Medicare Administrative Contractor (MAC) for 16 states. This MAC is recommending and supporting nurses’ roles in teaching these skills to caregivers.
In October 2005, Palmetto GBA developed the Local Coverage Determination (LCD) for Home Health Skilled Nursing Care-Teaching and Training: Alzheimer's Disease and Behavioral Disturbances (L31532), last updated 9/23/11. It states:
“This policy addresses a specific category of skilled nursing care currently available to Medicare home health beneficiaries with Alzheimer’s disease and behavioral disturbances —the category of skilled nursing care is called ‘teaching and training activities.’ Teaching and training activities are defined in the CMS Manual System . . . and in the case of the beneficiary population with Alzheimer’s disease and behavioral disturbances, could be part of a unique beneficiary-centered care plan directed at teaching the family or caregiver how to manage the behavioral disturbances.
Behavioral disturbances often complicate the medical management of beneficiaries with Alzheimer’s disease. At baseline many individuals with Alzheimer’s disease manifest activity limitations in such domains as communication and self-care. The occurrence of behavioral disturbances, if not addressed in a comprehensive and systematic manner, may further compromise the activity limitations present at baseline—resulting in sub-optimal clinical outcomes.”
The LCD provides scenarios describing the service. The behaviors described in these scenarios include uncooperativeness and wandering. Suggested treatment includes education for caregivers on:
- The disease process.
- Adapting the environment for success.
- Keeping activities familiar and simple.
- Using appropriate communication techniques.
- Using appropriate care partner approaches.
The MAC recognizes that behavioral disturbances can complicate medical management and further complicate activity limitations, resulting in a decrease in ability to engage in communication and self-care, which ultimately impacts clinical outcomes. Note that behaviors are described as actions that limit activity, such as uncooperativeness.
In addition, Medicare home health policy supports therapists’ roles in maximizing function, ensuring safety, and preventing decline through caregiver education. Specifically, the Medicare Benefit Policy Pub 100-02 Transmittal: 144 [PDF] states:
“To be covered, the skilled services must also be reasonable and necessary to the treatment of the patient's illness or injury or to the restoration or maintenance of function affected by the patient's illness or injury . . .
2. The patient’s condition requires a qualified therapist to design or establish a maintenance program:
- If the patient’s clinical condition requires the specialized skill, knowledge and judgment of a qualified therapist to design or establish a maintenance program, related to the patient’s illness or injury, in order to ensure the safety of the patient and the effectiveness of the program, such services are covered.
- During the last visit(s) for restorative treatment, the qualified therapist may develop a maintenance program. The goals of a maintenance program would be, for example, to maintain functional status or to prevent decline in function. . . .
- When designing or establishing a maintenance program, the qualified therapist must teach the patient or the patient's family or caregiver's necessary techniques, exercises or precautions as necessary to treat the illness or injury.”
The therapist’s reason for referral would be a functional limitation due to a behavioral disturbance such as resistance to or uncooperativeness with care. The therapist would need to discover the cause of the behavioral disturbance (e.g., environmental barriers, inappropriate caregiver approach, and/or inadequate communication techniques), the person’s best ability to function, and the type and frequency of cues the person requires to perform at his best.
The therapist would then design a maintenance program targeting the behavioral disturbance, teach the caregiver the necessary techniques, document the caregiver’s competence with the techniques, and document the resulting improved function.
Unfortunately, many home health providers have not been educated to provide these services.
Education for home health providers is needed on:
- The disease process and stages.
- Making the shift in thinking from teaching the client to teaching the caregiver.
- Assessment of the person in order to identify the person’s remaining abilities.
- Identifying the appropriate approaches that match the person’s abilities and facilitating those abilities.
- Preventing behavioral disturbances by providing the appropriate approaches and facilitating the person’s sense of pride and well-being.
When home health providers are not prepared, many Medicare beneficiaries with ADRD are unintentionally denied this service.
More education on dementia is being mandated in many states and is now being funded through the National Alzheimer’s Project Act initiative.
On January 4, 2011, President Barack Obama signed into law the National Alzheimer’s Project Act (NAPA), requiring the Secretary of the US Department of Health and Human Services (HHS) to establish the National Alzheimer’s Project.
Building on the preliminary work on this plan, on February 7, 2012, the Obama Administration announced an historic $156 million investment to tackle Alzheimer’s disease. This investment includes supporting people with Alzheimer’s disease and their families and educating the public and providers.
NAPA came about out of the recognized need to address the epidemic of ADRD and to provide education and support for caregivers. Home health providers should be at the forefront of providing this teaching and training. This education can result in measureable functional improvements and improved medical management for persons with ADRD, as well as decreased caregiver stress. The time is now; let’s make the choice to become educated.