As the population ages, nearly every family is impacted by Alzheimer’s disease or other forms of dementia. This diagnosis can be a slow decline, weighing on patients and families as “normal life” fades into unpredictability and confusion. Compassionate care and support is vital.
Heart to Heart Hospice is dedicated to educating families dealing with end-of-life issues related to the diagnosis. According to the Alzheimer’s Association:
- In the U.S. alone, more than 5 million individuals are living with the disease and over 15 million are acting as caregivers.
- Alzheimer’s is a fatal disease that kills nerve cells and tissue in the brain, affecting an individual’s ability to remember, think and plan.
- A majority with the disease will lose their ability to communicate, recognize family and friends, and care for themselves.
- Alzheimer’s is the most common form of dementia, accounting for 60% to 80% of cases.
- Patients live an average of four to eight years after diagnosis, but can live up to 20 years.
These numbers may be sobering, but there is help available for Alzheimer’s patients and their loved ones, including education and support from initiatives like the Alzheimer’s Association and well-informed hospice caregivers like those at Heart to Heart Hospice.
Alzheimer’s & Dementia: When is it Time for Hospice?
Patients qualify for Medicare hospice eligibility when their disease is terminal, curative treatments are no longer working, and have a six-month life expectancy or less. With dementia and brain-related diseases, however, the timeline can be difficult to pinpoint. The Functional Assessment Staging Test (FAST) describes seven stages of dementia with the typical duration of each stage.
Alzheimer’s and dementia patients are often given hospice referrals when they demonstrate common signs of FAST’s stage 7:
- Difficulty eating and swallowing.
- Assistance needed for walking, eventually unable to walk; becomes bedridden.
- Full-time help with personal care required.
- Substages include: little to no speech, inability to sit up without assistance, inability to smile, and inability to hold their head up without assistance.
- Vulnerable to infections, especially pneumonia, or secondary criteria like weight loss, pyelonephritis, septicemia,and urinary tract infections.
If these signs are evident, talk to your medical provider to discuss hospice. Patients might also qualify for hospice if they have a co-morbidity that will remain untreated given the late stages of their Alzheimer’s disease. Once hospice coverage is approved, extensive care is often needed in these final stages. Some families choose in-home care for the final months of life, while others need a memory care facility for round-the-clock care. Patients can requalify for hospice if they live past the six-month period and end-stage symptoms remain.
Medicare benefits don’t cover room and board at nursing facilities, but do cover hospice services such as non-curative medical care (comfort measures and pain management), hospice nurse visits, caregiver education and training, medical equipment, and extra resources like social workers, spiritual and emotional support, and grief and bereavement care.
Benefits of hospice care for brain diseases also include a 24/7 support line, short-term respite coverage at qualified inpatient centers or contracted nursing facilities to give caregivers a break, and guidance for end-of-life documents like advance directives and funeral planning.
It’s wise to discuss end-of-life issues, like advance directives, soon after diagnosis and early in the disease progression so your loved one’s wishes are honored during the hospice phase. Comfort, support, and dignity are core values of hospice care.
The Emotional Side of Alzheimer’s
No one can truly prepare for such a life-changing diagnosis, so it’s crucial to find knowledgeable support from those who compassionately walk alongside you on the journey. You don’t have to shoulder the burden alone.
Getting help from trusted counselors, ministers, support groups, and loved ones is a basic need for caregivers and patients. Many move from disbelief to denial to “what could I have done differently?” to sadness and anger and eventually, acceptance.
Acceptance is a process that requires time to grieve, patience, reinforcing a sense of self, and emphasizing their importance in your life no matter what changes are coming. Read this helpful article on Accepting the Diagnosis.
As a caregiver, you often have to deal with the daily management of medications, feeding, monitoring pain and symptoms, skin condition, bathing, grooming, emotional responses, and more. Caring for dementia patients sometimes include suspending current reality and stepping into their perceived reality, handling repetition, and dealing with a patient’s agitation or uncharacteristic outbursts.
Hospice providers like Heart to Heart Hospice help educate and encourage you so you feel capable and equipped. Our staff is specially trained in Alzheimer’s and dementia care.
Providing Loving Care When They Can’t Respond
Even if you’re loved one can’t express their needs or gratitude, evidence supports that their core self remains. You can still connect through their other senses, including these tips from the Alzheimer’s Association:
- Play their favorite music or read portions of meaningful books
- Look at old photos together
- Prepare a favorite food
- Rub lotion with a favorite scent or brush their hair
- Sit outside on a nice day
With hospice support, you are providing quality of life for your loved one who’s often in their most vulnerable state. Lean on that support and take heart in knowing that you’re doing your best to care for them and honor their wishes.