September is World Alzheimer’s Month, and World Alzheimer’s Day occurs annually on September 21, making this the ideal time to have a conversation with loved ones about the disease. If a family member has been diagnosed with Alzheimer’s disease or you have a family history of this form of dementia, you might have concerns about how to provide appropriate care as the illness progresses or questions about what to expect. Hospice and palliative care services can help family caregivers manage the unique challenges of providing a high quality of life during end-stage Alzheimer’s disease, so consider taking this month to look into your options after a diagnosis.
How Alzheimer’s Disease Affects Daily Life
Alzheimer’s is a progressive illness. Symptoms develop gradually over time, and each patient experiences the progression on a different timeline. In most cases, the progression takes years, so a dementia patient’s needs change and become more involved as time passes. Caregivers may find it harder to provide the necessary level of support and care in later stages, even if they’ve been successfully caring for the patient in the earlier stages of the disease.
Patients with dementia may experience difficulty with memory, language, concentration and spatial awareness. Mood changes, including irritation and restlessness, can also be symptoms of dementia. Unlike a terminal illness that develops in months, dementia progresses over a much longer period of time. Patients may lose awareness of having the disease or become confused about where they are or why they need help with everyday tasks. A loved one with dementia might question why they have to take medicine or might actively struggle against caregivers who are trying to help.
In late-stage Alzheimer’s disease, patients may become unable to get around on their own, dress or use the bathroom without assistance. Language skills may deteriorate to the point that the patient can’t communicate with caregivers and family members. Some dementia patients develop incontinence and have difficulty swallowing during the late stages of the disease. Mobility may become so impaired that the person can’t walk, stand or sit unassisted. During the final stages of the disease, some people develop other illnesses, such as pneumonia, urinary tract infections or septicemia, that can complicate care.
Challenges of Caring for Dementia Patients at Home
As Alzheimer’s disease progresses into late-stage dementia, more hands-on care becomes required to help the patient maintain the best possible quality of life. Someone in the final stages of dementia may not understand what’s happening, making it challenging for a family caregiver to provide support. Personality changes can cause family stress as the patient becomes unable to recognize familiar faces.
Feeding changes can cause weight loss or nutritional impairment in Alzheimer’s patients, and it can be difficult to get a family member with dementia to eat. The patient will experience difficulty swallowing but will not be able to communicate the difficulties, resulting in pocketing food, coughing, choking or aspiration.
Patients with a co-occurring condition, such as cardiovascular disease, COPD, diabetes or renal failure, may present even more challenges for caregivers. Your hospice care team can coordinate with your loved one’s regular health care provider to find strategies to alleviate symptoms of these illnesses in addition to dementia symptoms.
Hospice staff and volunteers who are specifically trained to deal with individuals who have Alzheimer’s or related dementias can help families navigate the end-of-life process. Patients can receive hospice care in their home or the home of a family member. The hospice team focuses on the patient’s comfort, including pain relief, as well as emotional and spiritual support. Social workers help families understand what to expect as the disease progresses and assist with navigating available services for individuals with dementia.
Hospice Care Offered to Alzheimer’s Patients
Hospice care is intended for individuals with a life expectancy of six months or less, so patients with Alzheimer’s disease or other forms of advanced dementia must meet the criteria to qualify for care. It can be hard to assess when the end of life will occur since the disease progresses at different rates for each patient, so families should begin the conversation about hospice care with a doctor when the patient begins to enter the later stages of Alzheimer’s disease.
Families caring for a loved one with advanced dementia who has a life expectancy of six months or more may benefit from palliative care even if the person doesn’t yet qualify for hospice services. Palliative care works in conjunction with treatment directed by a health care provider, so the patient can continue to treat Alzheimer’s or other concurrent diseases while receiving support services.
Respite care is another option for family members caring for an Alzheimer’s patient. This type of care is intended to give a short break to family caregivers. In some cases, coverage for hospice care, palliative care and respite care may be covered by Medicaid, Medicare or private insurance, so check with your provider to see if coverage is available.
How Hospice Care for an Alzheimer’s Patient Works
When a patient reaches the stage of Alzheimer’s disease in which everyday activities become too difficult for family caregivers to handle and the symptoms become dramatically more pronounced, a doctor can refer the patient to a hospice provider for end-of-life care.
Upon referral to Three Oaks Hospice, each patient receives an individualized care plan. The hospice team takes into account the patient’s condition and specific symptoms to determine what services are needed. Hospice providers may supply and set up medical equipment and medical supplies that assist families in caring for the dementia patient. This may include hope equipment, medications, or supplies such as feeding tubes that help manage the symptoms of the disease.
Hospice care workers can offer families suggestions for creating routines that help an Alzheimer’s patient feel more comfortable. Bereavement counseling is also available after the death of a loved one in hospice care to help family members deal with their grief.
Three Oaks Hospice Can Help
If your loved one has been diagnosed with Alzheimer’s disease, talk to your doctor about the right time to consider hospice care. Contact Three Oaks Hospice to learn more about hospice and palliative care options for patients who’ve been diagnosed with advanced dementia. Click here to view our locations across the country.