People caring for those with Alzheimer's or other dementias understand how difficult it is to provide this care, due to several characteristics of the disease itself, including:
While estimates vary, studies indicate that people age 65 and older survive an average of 4 to 8 years after a diagnosis of Alzheimer’s dementia, yet some live as long as 20 years with Alzheimer’s. This means that making care decisions can last for a decade or more for those in a family caregiver role.
Individuals suffering with Alzheimer’s disease progress through many phases. Of the total number of years that they live with Alzheimer’s dementia, individuals will spend an average of 40 percent of this time in dementia’s most severe stage. As the disease progresses, care needs change. Care choices may need to be re-evaluated again and again. When making care choices early in the disease process, consider how likely it is that different choices will be required in the future. Try to make choices that will minimize trauma and change for the person suffering with Alzheimer’s over the long-term.
The care needed during the most severe stages of the disease eventually involves assistance with all activities of daily living (ADLs). With Alzheimer's, as goes the brain, so goes the body. Those with the disease will eventually need assistance with everything. This includes walking until they can no longer; transferring from place to place as a person becomes nonambulatory; eating and drinking, until they can no longer because their ability to swallow without aspirating fails; toileting, and assistance required due to incontinence.
The loss of executive function associated with dementia can create hardships for caregivers in arranging for care. Once the disease is too far progressed, the person with dementia can no longer participate in the long-term care planning process.
Long-term care is expensive and advanced financial planning is important to ensure a person suffering with Alzheimer’s has the highest quality of care. Once the disease has progressed too far, the person will no longer be able to assist with decisions regarding paying for care.
Finding the right long-term care services for a loved one with Alzheimer’s requires a lot of time, research, and energy. Meeting with several professionals or organizations to make any single service choice is not atypical, and caregivers may need to go through this process several times throughout the disease process.
The best advice is that when it is possible, plan as much as possible in the earliest stage of the disease or even prior to diagnosis, simply in preparation for the aging process. Talk with loved ones about the kind of care preferred should anything happen that results in different stages of disability. Visit local care facilities together if viable. Plan and prepare financially and legally with all of the appropriate documents and insurances.
All of the advance planning will be the best blessing for everyone involved. It will allow you to worry less about what to do as each new day brings something challenging. It will allow you to focus more on being in the moment with your loved one and on bringing joy to their days, even with, and especially with, this disease. These are the moments that matter.