Dementia Caregiving: What About Hospice?

Dementia as a disease is devastating to caregivers for many reasons but the fact that there is no cure brings caregivers to cope with the end stages of the disease.  Hospice is a term we often hear but many are confused about the definition or purpose.

In the late, severe or end stages of dementia, the body processes are slowly shutting down.  Functions involved in eating, toileting, swallowing and walking become very difficult because the brain connections that tell the body to carry out these functions, are lost. 

The person with dementia is facing comfort and pain relief needs at this time and that is where hospice or palliative care comes in. So what is hospice? 

Hospice can be either a program or a facility that has a goal of providing a unique supportive environment to people who are at the end of life and their families.  Medical symptom relief such as pain management as well as emotional, social and spiritual support are given by a multi-disciplinary team.  The team varies in member type but usually includes a nurse, doctor, social worker, clergy and of course, the patient and their extended family.  The word "palliative" is often used interchangeably with hospice but palliative means "adjusting pain by making it easier to cope".

There are certain criteria that most hospice programs use to determine whether a person has reached a stage where hospice would be recommended.  Advanced dementia is one of many diseases that may fit the category.  If a person is recommended for a hospice evaluation, one or two members of the hospice team will visit the patient and caregivers and make a determination of whether hospice care is warranted.  If it is, the team members will outline how they will manage the emotional, spiritual, medical and social needs of the patient.

Next time, we will talk about what goes on during hospice care and organizations that may help you as a caregiver.