The Generative Brain

Palliative and hospice care

More detail

Palliative care treats symptoms and supports the family, and specialists advise involving it early rather than only at the end. Hospice teams can care for someone at home, in a care home or in a hospice building, and they also support carers before and after a death.

Who can be part of the care team
The person and their family
  • Neurologist
  • Family doctor
  • Palliative care
  • Nurses
  • Speech and language therapist
  • Occupational therapist
  • Social worker
  • Counsellor
  • Support groups

Families often hear the word hospice and think it means the very end. In prion disease the advice runs the other way.

When should palliative care be involved?

Early. UK specialists writing in 2026 encourage involving palliative care early to help guide conversations about what the person would want, and say those preferences should be sought ideally at the time of diagnosis. The reason is practical: a prion disease can move quickly, and the chance to take part in those decisions may be short.

The CJD Foundation gives the same advice about hospice in the United States, suggesting families make contact once a diagnosis is given, because hospice teams bring resources that help long before the final weeks.

What does palliative care actually do?

It treats symptoms and supports the people around the person. That covers the jerky movements called myoclonus, agitation, pain, sleep, saliva, and difficulty with eating and drinking. It also covers equipment, planning and the questions nobody else has time to answer.

Palliative care works alongside the rest of the team, which the 2026 recommendations list as the GP, occupational therapy, physiotherapy, speech and language therapy, district nurses, geriatrics and old age psychiatry, social work and the national prion services. In the UK the National Prion Clinic staff page lists a consultant in neuropalliative care from 2026.

Where does hospice care happen?

In several places. Hospice care can be given at home or in a nursing facility, and some providers have inpatient beds for more intensive symptom management, according to the CJD Foundation. Nurses usually visit at least weekly, more often as symptoms change. Social workers help with benefits, placement and decisions, and support the carer as well as the patient.

In the UK, enrolment is arranged through the medical team. In the United States, hospice enrolment needs an order from a physician for hospice evaluation and management.

What else can these teams offer?

Help that is easy to overlook. Washing, dressing, moving someone safely, and equipment such as a shower chair or a hospital bed. Music therapy and art therapy, which the CJD Foundation describes as useful when someone is confused or agitated. Chaplaincy and support for spiritual, religious and cultural needs, named in the 2026 recommendations alongside music therapy.

Is there support for the family too?

Yes, and it starts before a death rather than after. Hospice bereavement services include grief counselling before and after a death, with some programmes for young children. In Spain, the Fundacion Espanola de Enfermedades Prionicas offers free individual psychological support and a grief group. Grief and bereavement has more.

What should I ask for?

Ask who your palliative care contact is, how to reach them out of hours, and what medicines are already prescribed in case symptoms change at night. Ask what equipment can be arranged now rather than later. Ask about respite, which usually takes time to organise.

Practical and financial help covers benefits and costs, end of life decisions covers the formal choices, and after a new diagnosis is the earlier step if you have just arrived here. For the clinical detail behind this page, see palliative and hospice care: more detail.

Decisions about one person’s medicines and care belong with the team looking after them.

Sources for this page