Live-in care for Huntington's disease

For many people, yes, especially in the earlier and middle stages, when needs are mainly practical: help with personal care, meals, the home, keeping to routines and getting out. The carer also offers patience and steady company as mood and behaviour change. We'll talk honestly about whether needs are mainly practical or clinical, and when specialist care might be needed as the condition progresses.

We arrange one main carer and a regular second carer who covers breaks and holidays, so faces stay familiar, which helps a lot with Huntington's. You meet the carers we suggest and choose who feels right. We'll help you write down routines, likes and dislikes and what helps on difficult days, so handovers are smooth and your loved one feels settled with both carers.

Live-in care for Huntington's disease starts from £1,090 a week paid to the carer, plus our weekly agency fee of £250, and a one-off registration fee of £250. The household also provides the carer's food and a private room. The exact weekly rate depends on how much help is needed, especially at night, and we confirm it after a free assessment call, with no long contracts. Some people with Huntington's qualify for NHS Continuing Healthcare as needs increase. Our cost page and cost calculator show how live-in care compares with a care home.

Yes. Swallowing often becomes harder with Huntington's, and people may need more calories because of involuntary movements. Carers prepare food and drinks to the speech and language therapist's advice, offer frequent high-energy meals and snacks, and allow plenty of time. They watch for choking or weight loss and tell you or the health team promptly, so the plan can be reviewed.

Yes. The carer works alongside the GP, Huntington's disease specialist, community nurses and therapists, following their advice and keeping notes the family can share at appointments. The Huntington's Disease Association also has specialist advisers who support families, and the carer can help you stay in touch with them. Clinical decisions stay with the health team.

Yes. Huntington's affects the whole family, often over many years. A live-in carer takes on day-to-day care, so partners and children can rest, work and spend time together as a family rather than only as carers. The carer can also be a steady presence when mood or behaviour changes are hard for relatives to manage. Respite live-in care can give family carers regular breaks too.

Medicare People currently provides introductory live-in care services. We have submitted our application to the Care Quality Commission (CQC) and intend to introduce a fully managed live-in care service following registration. As an introductory agency, we find, check and introduce self-employed live-in carers, and the family agrees the day-to-day care with the carer directly. Before any introduction we carry out right-to-work, DBS and reference checks and interview every carer. Our team stays in touch after the carer starts, arranges relief cover for breaks and holidays, and finds a replacement carer if the match isn't working.