Caregivers of people with dementia are twice as likely to say they have emotional, financial or physical problems compared to caregivers of other patients.
Hospice and palliative care offer relief in two ways: providing compassionate care for those with dementia and much-needed family support, especially for caregivers.
Studies show that dementia patients in a hospice program have better pain control, are less likely to die in a hospital and their families have greater satisfaction with end-of-life care. You shouldn’t wait until you’re overwhelmed to get help.
“Our role is to lessen the burden on caregivers and connect the patient and family to life again,” said Kurt Merkelz, M.D., the Chief Medical Officer for Compassus. “Patients and caregivers are exhausted, but it’s not wrong to think in terms of meaningful outcomes. Safety, dignity, beauty and meaning; these are things we all can experience as long as we are alive.”
While hospice improves quality of life for those with end-stage dementia, there are challenges in knowing when it's the right time for a referral. The complex interactions between the declining brain and the body make it difficult for doctors to precisely determine how long anyone with Alzheimer’s can expect to live.
If you need help with a referral or have questions about eligibility, the care coordinators at a location near you have training and experience with Medicare and insurance requirements.
You may hear medical professionals talk about the Functional Assessment Staging (FAST) scale. It ranks dementia patients in 7 levels, based on their abilities with daily functions and activities.
For example, stage 7 means a patient suffers from incontinence and is unable to dress, bathe, walk, or use the restroom without help. They are unable to speak meaningfully or express coherent thoughts. Medicare requires a stage 7 ranking for hospice referral.
Unfortunately, many people don’t consider Alzheimer’s as a cause of death. In 2017, Alzheimer’s is the 6th leading cause of death in the U.S. During late-stage Alzheimer's patients can lose the ability to walk, sit and, eventually, swallow. They are also vulnerable to infections, especially pneumonia.
Hospice can meet the myriad of care challenges during end-stage Alzheimer's. Some of those challenges include:
- Behavior problems, especially aggressive behaviors
- Loss of communication skills, leading to unmet needs and imprecise pain control
Where will my loved one receive care?
Care can be provided anywhere a patient calls home. Most times that’s in a personal residence, but it can also be in a nursing home or group home.
Finding the right hospice
Consider the following questions when choosing a hospice program.
- Is the hospice provider certified and licensed by the state or federal government?
- Are hospice caregivers trained for the unique needs of patients with dementia?
- How will your doctor work with the doctor from the hospice provider?
- How many other patients are assigned to each member of the hospice care staff?
- Will the hospice staff meet regularly with you and your family to discuss care?
- How does the hospice staff respond to after-hour emergencies?
- What measures are in place to ensure hospice care quality?