Robert was living in a nursing facility following a series of strokes. As his dementia advanced and his health deteriorated, his family chose to begin hospice care. While Robert was always cheerful, his ability to self-feed and to speak slipped away. His day-day-care became more rigorous; and the added skilled hands of his hospice team were welcomed by his facility.
As care for Robert intensified, so did our interaction with his lovely wife, who was living through many stages of grief as Robert failed. Ingrid met Robert soon after WW2, when she came to this country from Austria and took a job as a secretary in Robert’s company. Many of Ingrid’s memories were of Robert as a powerful executive, and his changes both saddened and angered her. Dealing with her own health problems, worried about the expenses of his care, and actively grieving her losses, our physical care was for Robert, but our emotional and spiritual care were for Ingrid.
Managing medically
In hospice our dementia care management plans change throughout the progression of disease. When the patient has Moderate Dementia, his needs will be different than when he is at End Stage. Here are some examples of adjustments we’ll make during the course of hospice:
End certain medications: Aricept or Namenda are two that we often discuss discontinuing when patients advance to End Stage dementia. The side effects outweigh the benefits (which are nil at this stage).
Wound care: For patients who are bed-bound, incontinent, have compromised nutritional status, low albumin, pre-albumin and serum protein levels, there is little chance that wounds will heal. Our focus becomes on relieving any pain and preventing further spread of the wound or infection.
Nutrition: In End Stage dementia, many patients will be placed on a mechanical soft or pureed diet due to dysphagia and the risk of aspiration. The required caloric intake too, will be less.
Other: We sometimes consider indwelling catheters for patients who are incontinent and bedbound. This may help reduce the risk of developing decubitus ulcers. At the very least, it helps with reducing the need to change bed linens, reposition the patient as often to change adult incontinent briefs and reduces some of the physical exhaustion experienced by the family member that is responsible for this task.
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Conversations with family
Like many conversations with family members facing hospice for a loved one, this one is not easy. When dementia is advanced, family members have already begun grieving for the person they used to know and are often exhausted from the level of care they are providing. Hospice providers are additional hands and hearts to care for the patient. What many caregivers may not know is hospice’s role in supporting the family. Whether it’s an hour’s respite while a volunteer visits, a skilled hand at ADLs or a chance for a cup of coffee and an uplifting conversation, hospice professionals support families. Ingrid was surprised at the time we spent with her.
At onboarding and throughout, hospice staff will reiterate information about hospice services, provide hands-on training and tips for caring for the patient, direct the family to online resources or support groups, and educate about disease progression. These are skills in our tool belts that we will share repeatedly with families, especially because of the generally longer length of stay for those with dementia.
What’s important, but not always available?
Hospice is about the patient’s wishes. For most, signing on to hospice is a decision. For patients with dementia, informed consent may not be possible at this stage. In this case, caregivers must follow state-specific laws about admission to hospice service.
Ideally, all of us would complete Advanced Directives when we are healthy, and would work with our physicians to create a POLST (Physician Orders for Life-Sustaining Treatment, also known as POST, or MOLST in some states) when we begin to fail physically.
Hospice is about family. When families are involved, we have a unique insight into the patient. The family knows the patient better than anyone and becomes the voice of the patient. However, the reality is that not every hospice patient has family. Hospice still happens.
Like so many things in life, caring for patients on hospice is about finding the unique and individual in each and making a connection. For patients with dementia, finding that unique spark may be more complicated, but our challenge as healthcare and hospice professionals is to meet the patient where they are, to provide comfort, to relieve pain, and to support the families that walk beside them. What could be more meaningful?