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Conditions

Muscular dystrophy care at home

Support at home that keeps pace as muscle weakness changes: personal care, moving safely, getting out, and planning the next step before it is urgent.

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What muscular dystrophy is

Muscular dystrophy is a rare genetic condition that causes muscle weakness that gets worse over time. There is currently no cure, but treatment can help with symptoms. Some types start in early childhood and others later in life. The most common type, Duchenne, begins in early childhood, usually only affects boys, and progresses quickly (NHS). Some types also affect the heart, which the specialist team keeps an eye on.

Muscular Dystrophy UK has information and support for each type.

What a carer does

  • Personal care: washing, dressing and continence care
  • Transfers and moving safely, using the equipment the therapists recommend
  • Stretches and exercises the physiotherapist has shown, following their written plan
  • Meals, housework and shopping
  • Getting out: work, college, appointments and friends
  • Noticing changes and telling the family and the specialist team

Care and clinical care

Carers give personal and practical care. Clinical tasks, such as injections, wound care or changing a catheter, come from the NHS team unless a carer has been trained for that specific task and it has been agreed with the team. Tell us about all care needs up front so we only introduce carers who can help safely.

Planning for change

Because the condition progresses, review care regularly and plan the next step before it is urgent.

Help paying for care

  • Personal Independence Payment: for people aged 16 or over with difficulty with everyday tasks or getting around, usually under State Pension age for a new claim, and not affected by income or savings (Adult Disability Payment in Scotland)
  • Council funding: after a free needs assessment and a means test
  • Direct payments: council money you can use to arrange your own care
  • NHS Continuing Healthcare: when needs are mainly health needs
  • Access to Work: a grant towards practical support at work, such as a support worker or job coach

A Disabled Facilities Grant from the council can help pay for changes to the home, such as ramps, grab rails, a stairlift, a level access shower or a downstairs bedroom. It is up to £30,000 in England, £36,000 in Wales and £25,000 in Northern Ireland, depending on household income and savings. It is not available in Scotland, where the council can advise on equipment and adaptations. Don't start the work before the council approves the grant.

Rates and rules checked against GOV.UK and the NHS in October 2026. Benefit rates usually change each April.

  1. Tell us about them

    The diagnosis, how they are now, routines, and what matters to them.

  2. See matched profiles

    Profiles say what experience each carer has, so you can choose with care.

  3. Speak first

    Talk to carers by phone or video call before you agree to anything.

  4. Care starts

    You and your carer agree the routine, and change it as needs change.

How carers are checked

Before LCH Care introduces a carer, we check their identity, right to work in the UK, Enhanced DBS, two references, work history, and relevant training or qualifications. Carers also hold their own public liability insurance. You then speak to the carer by phone or video call before you agree to anything.

Other conditions

Questions

Does muscular dystrophy get worse?

Yes. It causes muscle weakness that gets worse over time, at a speed that depends on the type.

Can care change as needs grow?

Yes. You and your carer agree the routine and change it as needs change, from hourly visits to live-in care or two carers.

Can a carer help with physiotherapy exercises?

A carer can support exercises the physiotherapist has shown, following their written plan.