Caring for a loved one with Alzheimer’s Disease is an often difficult road that requires wisdom, compassion, and support. Over 11 million Americans* provide unpaid care for people with Alzheimer’s and other dementia diseases. The need for dementia-related caregiving is on the rise. In fact, stats show that more Medicare hospice patients had a principal diagnosis of Alzheimer’s/Dementia/Parkinson’s than any other disease.**
As caregivers become more stressed and weary, where do they go for support? How can they properly care for someone who may be confused and can’t verbalize their needs clearly? If the disease has taken years to progress, when do they qualify for hospice? What unique benefits can hospice provide for their loved one with Alzheimer’s?
Dementia is the umbrella term for loss of memory and other thinking abilities severe enough to interfere with daily life. Alzheimer’s Disease is a progressive brain disorder, not simply typical signs of aging. During Alzheimer’s Awareness Month this November, Heart to Heart Hospice aims to assist caregivers and patients understand dementia-related hospice care. Heart to Heart’s professional staff is trained to help provide a patient-centered plan and dignity at the end of a patient’s life.
Alzheimer’s and Qualifying for Hospice
Patients typically qualify for hospice coverage when: 1) curative treatments are no longer working or desired and 2) a doctor diagnoses the patient as terminal with a life expectancy of six months or less. The unpredictable progression of Alzheimer’s may take years to move from mild to severe, however, and a clinical determination may be more difficult.
The Alzheimer’s Association encourages patients and loved ones to request a hospice evaluation if they notice these signs of late-stage (or severe stage) Alzheimer’s:
- Needing around-the-clock assistance with daily personal care.
- Losing awareness of recent experiences as well as of their surroundings.
- Changes in physical abilities, including walking, sitting, and eventually, swallowing.
- Difficulty communicating (written or verbal).
- Vulnerable to infections, especially UTIs and pneumonia.
- Increased sleeping and weight loss.
Hospice care takes place wherever the patient calls home, including a private residence or long-term care or residential facility. Medicare beneficiaries who elect hospice receive non-curative medical care and supportive services for their terminal illness covered at little to no expense. VA benefits and private insurance plans may also cover hospice expenses.
End-of-Life Care & Dignity for Alzheimer’s Patients
Many families caring for Alzheimer’s patients don’t take advantage of hospice support, with a reported 20.9% of end-stage dementia patients on hospice when they died. Starting from a place of dignity and compassion, Heart to Heart Hospice meets with families to coordinate an individualized care plan. Our interdisciplinary team is here to help.
A hospice care plan can include:
- Pain and symptom management, including skin conditions, incontinence, nutrition and hydration, recurring infections, anxiety, and agitation.
- Medication compliance and keeping patients comfortable.
- Help with activities of daily living, such as bathing and hygiene.
- Preventing unnecessary hospitalizations with comfort care, 24/7 on-call nurses, and regular in-home visits. Studies show hospice support reduces hospitalizations.
- Coordinating care with/for physicians, support services, medical supplies, equipment, medications, and more.
- Whole-person support for physical, mental, emotional, and spiritual well-being.
One vital aspect of hospice care is education, training, and compassion for overwhelmed caregivers. When a dementia patient is unable to communicate, hospice professionals help caregivers recognize what a patient needs for pain (both verbal and non-verbal) and other symptoms to watch for, including the final physical signs of dying. On-call support helps alleviate fears and questions.
Nurses, aides, and volunteers also provide presence and comfort. In addition to medical support, social workers, spiritual care coordinators, and bereavement coordinators help navigate difficult end-of-life planning and grief. Not only is the quality of life for the patient improved, so is the caregiver’s. Additionally, hospice covers short-term respite care to provide caregivers a much-needed break.
Broaching the subject of hospice can be tricky, especially with patients suffering from dementia-related illnesses. Talking earlier in the process after a diagnosis helps create clarity regarding the patient’s wishes while they are still able to articulate them. Assure them that their comfort and quality of life is the goal. Hospice isn’t giving up, but provides patients and caregivers peaceful, knowledgeable end-of-life care.
Contact Heart to Heart Hospice in Texas, Michigan, or Indiana to inquire about hospice support for your loved one. Our Patient and Family Handbook provides an essential resource for planning, expectations, safety, and caregiver guidance.
**National Hospice and Palliative Care Organization (NHPCO) Facts and Figures report, 2021 EDITION