Making Hospice Meaningful for Patients with Dementia

It can be hard to look beyond the symptoms of dementia to see the person within, but that’s at the core of how Crossroads Hospice cares for patients.

Years ago, I met a nurse named Beth who told me that she felt a true calling to care for older adults suffering from mental illness. At the time, I thought, “Wow. She feels called to care for those patients no one else wants to care for.” Now, I think “Wow. She’s one of the legion of amazing caregivers who sees the people for who they were, and not the diseases that plague her fragile charges.”

I admire Beth even more today.   

Lots of Beth’s patients were suffering from various forms and stages of dementia, and their illness made them difficult for family members or long-term care facility staff to manage safely. Today we have more tools in our belt to help patients with dementia. However, talking with them about end-of-life care still requires patience, understanding, and solid diagnostic evaluation of their ability to communicate and understand.

Start with the person.

“Most of us became nurses, social workers, chaplains, therapists or CNAs in order to help people, not to merely treat diseases,” says DeAnna Looper, RN, CHPN, CHPCA, Vice President of Clinical Operations at Crossroads Hospice. “If we start with the person and always remember that despite the agitation, verbal non sequiturs or even lack of ability to speak, we must focus on individuality. Always try to remember the uniqueness of the patient, personal things such as Mrs. Jones raised a family, went to work during the war, and grew prize-winning roses.” At Crossroads Hospice, our only “cookie cutter” approach is that all of our patients will be treated with dignity and respect, and part of that is recognizing their uniqueness and reflecting it in their ever-evolving hospice care plans.”

“Dementia isn’t Mrs. Jones’ identity, it’s her condition,” DeAnna adds.

Know that evaluation isn’t all about the numbers.

Numerous scales and tools are useful in assessing the level of dementia a person has, including but not limited to the:

• Mini Mental Status Exam (MMSE)
• Palliative Performance Scale (PPS)
• Functional Assessment Staging Tool (FAST)
• Family-supplied information

Then, we establish an individualized plan of care to ensure that we are communicating with the patient in the means that is the most effective and the least frustrating for the patient and more reassuring for the family. With dementia, this can change from day to day or even hour to hour depending on the orientation status of the patient at any given moment. (Watch for a future blog on on-boarding patients with dementia to hospice.)

Adapt your communication.

Here are some additional tips that can help to de-stress the patient, and, in turn, the family and caregiving staff as well:

• Avoid open-ended questions. Can the patient answer yes or no?
• Call the person by their name.
• Get their attention by limiting distractions.
• Speak slowly and in short, simple words and sentences.
• Wait patiently for your patient to respond (if he/she is able).
• Avoid using confusing statements or jargon.
• Reduce excessive external environmental stimulation such as blaring TVs, lawn mowers, loud voices or sirens.
• Use redirection to garner your patient’s attention, or to de-escalate anxiety
• Reorient the patient to the time or place.
• Avoid quizzing patients as it will likely add to their anxiety level.
• Smile. Smiles are reassuring.

Involve family.

“When the family is involved, we have unique insight into the patient,” says DeAnna. “Since the patient has dementia and typically cannot or is limited in the amount they can participate in their own care, the family becomes the voice of the patient.”

Family members or the primary caregiver are going to be called upon to make some decisions when the patient is unable to speak for him or herself. Of course, it’s always preferable to have Advanced Directives and a POLST form on file (we always put in a plug for taking control of your own care while you can and completing these forms when you are well).

Be creative with care.

Hospice care is always about comfort and pain prevention, but when the patient has advanced dementia and cannot communicate, it takes creativity to find a means to soothe.

• Speak to the patient as if he or she can understand you. There is evidence that even when patients have end-stage dementia they still have periods of lucidity.  Watch for nonverbal signs of pain. Try to ascertain if the cues given are related to pain or other symptoms such as anxiety or fear.
• Use complementary therapies to supplement other clinical care: massaging the feet, using aromatherapy, and music may all ease anxiety. Threshold Choirs, volunteers who sing to those on the threshold of living and dying, bring a calm and focused presence. Pet therapy can soothe immensely.

Hospice is by definition holistic, taking on physical, emotional and spiritual care for those at end of life. Finding ways to communicate with our patients, despite cognitive impairment caused by dementia is paramount.

Watch for future articles on working in hospice with patients with dementia.

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