Ricky’s talks about how his Gran’s dementia diagnosis impacts his whole family and why he is supporting the ‘We live with dementia’ campaign.
Looking after a person with dementia can be challenging – and if you care for someone from a distance, you may experience a different set of challenges. For example, you may not be able to pop in regularly or respond to issues quickly.
Nevertheless, you can still play an important part in supporting the person you care for.
Caring from a distance is when you support and help someone who doesn’t live nearby.
This could include:
- offering support and companionship by phone
- managing the person’s bills and benefits
- managing daily household matters, such as food shopping deliveries
- co-ordinating their medical appointments and/or visits from health and care professionals
- arranging their prescriptions
As dementia progresses, many people will lose the capacity to make informed decisions, so it’s important that they draw up a lasting power of attorney (LPA) while they are still able to.
This is a legal document that allows you and/or other nominated people to make health, care and financial decisions on the person’s behalf if they cannot do so.
You could also sign a ‘proxy agreement’ with the person’s GP so they can discuss their care and treatment with you. Ask the Practice Manager how to arrange this.
It’s helpful to keep all the information you have about the person with dementia in one place, such as a ring binder, a box file or a document on your computer.
In the next sections, we suggest information that you could include.
- details about the person’s dementia and any other conditions
- a list of their medications
- contact details for their health and social care professionals eg GP, dentist, optician, social worker, care agency
- the person’s care plan – make sure you update it if it changes
- information about help they need with daily living, eg washing, cooking, taking medication, housework, shopping
- any statements of their wishes for future care and medical treatment, such as an Advance Care Plan
- details of local friends and neighbours who are willing to visit and be called on for help
- activities they enjoy, and any help they need to take part in them
- details of their daily/weekly routine – eg do they go to a day centre on the same day each week?
- contact details of volunteers/charities that support them
- details of the person’s bank, building society, pension provider, utility providers, solicitor etc
- details of where they keep important documents, such as bank statements, benefits statements and their Will – if possible, have your own copies
- a copy of lasting power of attorney documents
These tips may help the person you care for live safely and comfortably at home if you’re too far away to visit on a regular basis.
- Visit – or arrange for someone else to visit – the person’s home to identify any hazards, or anything that could help them live more independently
- Ask the local Social Services team to carry out a Needs Assessment to identify what equipment and support the person might need at home
- Try to build a network of local people to give you updates about the person, such as neighbours, other relatives and friends
- Find out if someone locally, such as a trusted neighbour, could keep a spare key
- Consider installing a key safe in case emergency access is needed
- Consider using the Lions Club ‘Message in a bottle’ scheme – a bottle containing information about the person that is kept in their fridge so emergency services can access this information quickly
- When you visit, take stock of how well the person is coping – for example, does their condition seem to have deteriorated? Have they lost weight? Are there signs that they are neglecting themselves or their home?
- Look into signing up for 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 living in a care home, or is in hospital or a hospice, you can still support them even if you can’t often visit in person.
- Find out when and how it is best for you to contact the person or their carers – eg avoiding mealtimes
- Ask to be told what the person has been doing (eg a trip out or group activity), so that you can talk to them about it
- Ask how you can give staff information or feedback about the person’s care and discuss any support plans
- Make sure the care setting knows if you have lasting power of attorney
- Check the procedure regarding consent to share information with you
- If other family members or friends live nearby, ask them to contact you with an update after visiting
Taking care of yourself is important when you’re caring from a distance.
These tips might help:
- Think about the practicalities of the support you can offer – eg how you will manage travel time and expenses
- If you work, tell your employer that you are caring from a distance – they may be able to offer support, eg time off in an emergency
- Talk to your GP about any support they can provide, such as access to carers’ groups or counselling
- Request a Carer’s Assessment to discuss what would help you in your caring role – see Sources of support
- Accept help from others, especially those who live nearer the person with dementia
- Try to maintain a connection with the person outside your caring responsibilities and enjoy the time you spend together, whether it’s on the phone, by letter or in person
To speak to a dementia specialist Admiral Nurse about caring from a distance or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email email@example.com or pre-book a phone or video appointment with an Admiral Nurse.
Dementia UK resources
- Making the home safe and comfortable for a person with dementia
- Considering a care home
- Lasting power of attorney
- Advance Care Planning
- Finding support and assistance at home
- Looking after yourself as a carer
- Getting the most out of GP and other health appointments
- Getting the most out of remote consultations
- GP online services
- The Carer’s Assessment
Other useful resources
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.