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Caring from a distance

Caring for a person with dementia when you do not live nearby can be challenging. For example, you may not be able to pop in regularly or respond to issues quickly. However, you can still play an important part in supporting the person. For example, you could:

  • speak to them by phone or video call to offer companionship and support – having a regular time to talk, which you could write on a calendar or whiteboard, can give them something to look forward to
  • help them manage their bills and benefits
  • help organise their daily household matters, such as food shopping deliveries, meals on wheels (via social services) or arranging for a neighbour to put their rubbish out
  • coordinate their medical appointments, prescriptions and/or visits from health and social care professionals – with the person’s permission, their GP could name you as their ‘proxy’ so they can discuss their healthcare with you
  • organise transport for hospital and other appointments
  • send photos, letters, postcards or small gifts to show you are thinking of them

Caring from afar often involves coordinating lots of tasks. But it is equally important that you and the person with dementia spend time connecting and enjoying each other’s company, no matter the distance.

It is important for the person with dementia to make a lasting power of attorney (LPA) as soon as possible. This is a legal process where they appoint one or more trusted people to make decisions on their behalf, in their best interests, if they lack the mental capacity to do so themselves.

There are two types of LPA:

  • property and financial affairs
  • health and welfare

Being named on the person’s LPA means that if they cannot make a decision about their finances, property, health or care issues because they lack capacity, you can do it for them, even if you do not live nearby.

If the person is willing, find out where they keep important documents like their LPA and Will. With their permission, you could also keep a record of login details and passwords for bank/building society/investment accounts, insurance policies and utility accounts, including mobile phone and broadband, so you can access them in a situation where you cannot help in person. Ensure they are kept in a secure place.

Find out whether the person has an advance care plan (ACP), advance statement, advance decision to refuse treatment (ADRT) or do not attempt CPR (DNACPR) instruction. If so, keep copies of these documents, as they are official statements of their wishes regarding future medical treatment and care – and ADRTs and DNACPRs are legally binding.

It is helpful to keep all the information you have about the person with dementia in one place, such as a box file or a folder on your computer, so you can find it easily if your help is needed – for example, if the person becomes unwell. You could include:

  • important contact details, eg GP; carer/care agency; dentist; optician; social services; landlord; neighbours/local friends who are willing to help; employer; school of any dependent children
  • information about the person’s dementia, eg type, how it affects them, medication (if applicable)
  • details of any other health conditions and medications, falls or hospital admissions
  • information about the person’s support needs, eg whether they need help with personal care, housework, laundry, cooking, eating and drinking etc
  • details of any paid or volunteer carers, eg contact information, usual visiting times, what they help with
  • information about any assistive living equipment they use, eg a walking frame, bath seat or personal fall alarm
  • details of their weekly routine – do they attend any day centres, support or activity groups, hairdresser’s appointments, or places of worship? How do they get there?
  • if the person drives, details of their driving licence number, car registration number, insurance, breakdown policy and Blue Badge. Ensure they have informed the DVLA (DVA in Northern Ireland) and insurance company of their dementia diagnosis – this is a legal requirement

These are just some ideas. Every person with dementia has individual needs, so take time to think about any specific information to include that would make it easier for you to care for them from a distance.

If possible, visit the person’s home to ensure that it is safe, comfortable and manageable for them. If you cannot visit, ask a local family member or friend to take a look.

  • Look for trip hazards such as loose rugs, trailing wires and clutter
  • Check the window and door locks work
  • Consider installing a key safe in case carers or emergency services need to access the home; or giving a trusted neighbour or local relative/friend a spare key
  • Think about home adaptations that might be useful, eg ramps, a stairlift or grab rails – social services can carry out a needs assessment to identify equipment that might help
  • Check for problems like damp, leaks and breakages
  • Contact the local fire service to request a home fire safety check (do not call 999 for this)
  • Think about assistive technology that could help the person, such as a dementia clock, electronic pill organiser, picture phone, memo board and voice reminders on a smart device like Alexa
  • Make sure the person has a list of important numbers – including details of who they can call for help – saved in or kept near their phone

Whenever you visit the person with dementia, reassess their circumstances:

  • Have there been any changes in their personal hygiene, appearance, weight and general wellbeing?
  • Are there signs that they are struggling to look after their home, eg increasing untidiness; unemptied bins; out of date food in the fridge; an overgrown garden?
  • Are they attending appointments, regular activities, etc?
  • Are they managing financial matters like paying bills and renewing insurance policies on time?

Ask the person themselves, as well as their local family, friends, health and social care professionals, if they have any worries about their health, living arrangements or ability to cope.

If you are concerned about the person’s safety if they leave home alone, you could think about using a form of tracking – with their knowledge and consent – such as a phone app, smartwatch or tag attached to their handbag or coat. You could also sign up for:

  • the Lions Club ‘Message in a Bottle’ scheme – a bottle containing the person’s basic personal and medical information is kept in their fridge so emergency services can access it quickly
  • the Herbert Protocol – a national scheme that allows the police, social services and other local services to share useful information about the person if they go missing

If the person with dementia is in a care home, hospital or hospice, you can still support them even if you cannot often visit in person.

Find out about the care setting’s routine, such as mealtimes, bedtime, medication rounds and activities, so that you can contact the person at the most suitable time. Ask about the best way to do this – do they have their own phone, or should you phone a member of staff?

Ask to be kept informed about activities the person has taken part in (eg an outing, music activity or gardening) so that you can talk to them about it. You could also tell the care home about activities that the person might enjoy, such as pet therapy or visits from local school choirs, and help to arrange these.

Talk to staff about how you can be kept informed about the person’s health and wellbeing, and how you can provide information or feedback. Is there a particular time when the health and social care team visits to review the person’s care? Make sure they know if you have LPA and ask if they will let you know if there is an incident like a fall.

If other family members or friends live nearby, ask them to contact you after visiting to give you an update.

If the person with dementia has other family members or friends living nearby who help with their care, these people may need support themselves. You could, for example:

  • provide emotional support by phone, video call, email or letter
  • help them arrange support for the person with dementia, such as befriending services, day centres or residential respite care. This will give the day-to-day carers a break
  • arrange to visit the person yourself if possible – whether for a day or a short stay – to give their usual family carers some time off
  • set up a WhatsApp group where you can share information about the person and support each other

If you are caring from a distance, you might be juggling many things, such as work and family life, as well as your caring responsibilities. You might feel uninformed about how the person with dementia is managing, excluded from decisions, or guilty about not being nearby. You might have financial worries if you are paying – fully or in part – for the person’s care.

Think about the practicalities of the support you can offer, such as the travel time and expenses involved. If you work, consider talking to your employer so they can support you, for example by allowing flexible working so you can visit the person more often.

If you are feeling overwhelmed, talk to your GP about accessing support such as carers’ groups. You could request a carer’s assessment to discuss what would help you in your caring role – even if you do not live near the person with dementia, you are still their carer. You could also speak to a dementia specialist Admiral Nurse: please see Sources of support.

Above all, be realistic about the support you can offer, and do not be afraid to talk to other family members and friends and ask for help – caring for a person with dementia is often a joint activity, and when you pull together, life is easier for everyone.

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