Needs change quickly in this illness, so equipment and help are worth arranging before they are needed rather than when they become urgent.
Who arranges what
An occupational therapist advises on walking aids, adaptations to the home and equipment, and is the person to ask first. District or community nurses look after skin and pressure care. A continence service provides pads, advice and assessment. A physiotherapist advises on safe moving and transfers. The 2026 UK recommendations for CJD care name all of these as part of the team, alongside the GP, social work and palliative care.
If nobody has mentioned any of them, ask the person coordinating care to make the referrals.
Falls and moving someone
Unsteadiness and poor coordination are common, and there is no medicine that treats the unsteadiness itself. What helps is reducing hazards, using the right aid, and keeping the route to the toilet short, clear and lit.
The 2026 recommendations also ask clinicians to review any medicine that increases the risk of falling or worsens movement symptoms. That review is worth requesting rather than waiting for.
The CJD Foundation publishes a physiotherapy handout covering fall prevention, home modifications, assistive devices and transfers. Learning a safe transfer technique from a professional protects your own back as well as the person you are caring for.
Skin
Once someone is in a bed or chair for most of the day, skin becomes a daily is important. The 2026 recommendations advise frequent repositioning and regular skin checks, with referral to a tissue viability service when needed. Pressure-relieving mattresses and cushions come through the nursing team or occupational therapy.
Continence
The approach in the guidance is practical before it is medical: toileting at set times, easier clothing, changes to the room and route, continence pads, and referral to a continence service. Medicines for bladder symptoms are rarely used in this illness. In the later stages, where frequent changes are distressing for the person, a catheter may be considered.
The room itself
Light, sound and touch can set off muscle jerks and agitation, so a calm room with lowered noise and softer light is part of care rather than a nicety. Familiar objects, familiar music and familiar voices help.
Help with the hands-on work
Most families cannot do this alone, and are not expected to. Ask about personal care visits, night sitting, and respite. The 2026 recommendations list practical and personal care, domestic help and respite among the things that help carers, which means they are reasonable to request by name.
CJD Care India publishes a caregiving post with practical home care suggestions and points families to CJD Foundation tools and the United States helpline. Support organisations in other countries are listed on support groups.
What belongs with the care team
Any new symptom, any fall, a change in breathing or swallowing, and any medicine that seems to have made things worse. Nothing on this page can tell you what is happening with a particular person.
Related pages: communication and behaviour changes, eating and swallowing, practical and financial help and the care hub.