Alzheimer’s. The word evokes a myriad of emotions, from sadness, anger, and fear to love and a sense of nostalgia for those who have walked with a loved one through that difficult journey. In 2018, nearly six million Americans had Alzheimer’s disease. By 2050, that number could rise to 14 million. It is the sixth leading cause of death in the United States, killing more people than breast cancer and prostate cancer combined. Most people are familiar with the disease, either as a patient, a caregiver, or as an extended family member, friend, or loved one of someone living with the disease. As a nation, we remember singer Glen Campbell, who publicly documented his journey with Alzheimer’s and memorialized his experience in his poignant song, “I’m Not Gonna Miss You.” Alzheimer’s is a dreadful disease that affects us all.
In talking about walking the best path through the Alzheimer’s journey, we must first acknowledge that there is no one, best path that everyone takes. The journey is different for every patient and family. A person diagnosed with Alzheimer’s at age 70 may walk a much different path from a person who is diagnosed at age 90. One person’s Alzheimer’s may remain in the early-mild stage for years, while another person may experience a more rapid progression of the disease. Many people with Alzheimer’s have spouses and children who can provide care and support, but some do not, which can limit their options. A person’s finances will also affect the path they take, as the long-term care options for those with Alzheimer’s are often expensive, and some are not available to those who must rely on Medicaid to pay for care.
There are a variety of paths one might walk along the Alzheimer’s journey, and those paths may intersect along the way:
Family Caregivers
Over 16 million Americans serve as family caregivers to people with Alzheimer’s and dementia, helping their loved ones with various tasks from bathing and dressing to running errands. In 2017, family caregivers provided over 18 billion hours of care, with their time valued at over $232 billion. By 2050, the cost of Alzheimer’s is expected to rise to over one trillion dollars.
Home Care Options
• Home Assistant Services. These services are needed when it becomes hard to manage the instrumental activities of daily living, such as cooking, cleaning, transportation, paying bills, and running errands.
• Home Health Aides. These services are needed when it becomes hard to manage some of the activities of daily living, such as showering, toileting, and getting dressed.
Having home care options can be a tremendous help to both Alzheimer’s patients and their caregivers, and enables those with Alzheimer’s to stay in their homes for as long as possible.
Community Options
• Adult Daycare. This option provides support to patients and their families in a community setting. Patients can get out of the house, socialize with others, and engage in activities under the supervision of caregivers.
This option also provides some respite for family caregivers, and may include meals and transportation.
Facility Care Options
• Assisted Living. These facilities are for those who need more care than can be given at home, but not round-the-clock care. Personal and health services are provided, but the participants are still somewhat independent.
• Nursing Homes. Nursing homes provide a level of care for those who need supervision at all times and who are unable to perform the activities of daily living for themselves. Many Alzheimer’s patients in the later stages of the disease can benefit from nursing home care. In Washington, nursing home care costs over $117,000 per year on average.
Alzheimer’s is an insidious disease. While there is no one-size-fits-all way to walk the Alzheimer’s journey, there is a best path for you and your family. There are financial and legal considerations that must be taken into account, so you will need to consult with the appropriate professionals to ensure that you and your family are as prepared as possible for this journey.