Finding help and support at home

But while you might feel that you are ‘failing’ as a carer, giving up or letting the person down, home care and support can benefit both you and the person you care for. 

It can: 

• relieve some of the physical strain on you (eg lifting, dressing) 
• reduce agitation and distress for the person with dementia – paid carers often have training and skills for handling difficult caring tasks  
• help provide a daily routine
• improve your relationship by having someone else take over the tasks you both find stressful or upsetting
  
• provide social interaction and reduce isolation for you both 
• enable you to take time out for yourself 
• support the person with dementia overnight so you can sleep
• keep the person with dementia connected to the community  
• ensure they’re eating and drinking well (especially if they live alone)  
• enable them to remain in their own home for longer 

• informal help from family members and friends
• a cleaner or gardener to help with household and garden chores
• a befriender (often a volunteer) who can provide the person with companionship and take them out to groups and activities
• paid carers who help with personal care and daily living activities – they may visit a few times a week, every day or several times a day
• 24-hour live-in care, where a paid carer stays in the person’s home to provide round-the-clock support

A volunteer or paid carer could help with:  

• preparing meals, cleaning or gardening  
• managing medication
• physically moving the person with dementia – for example, helping them in and out of bed 
• personal care such as washing and dressing 
• helping with toileting and managing incontinence 
• supporting them with ‘sundowning’ – a state of confusion and anxiety that some people with dementia experience at dusk 
• encouraging them to take part in activities, such as exercise, reading, games or socialising  
• providing night-time care so you can get more sleep 
• managing distressed behaviour, such as pacing, shouting or anger  

You might feel uncomfortable accepting their offers of help or actively seeking support, but people often want to help – sometimes they just don’t want to interfere, or are unsure of what you need.  

You could suggest things they could do to make your life easier, such as:  

• picking up shopping or prescriptions  
• doing some cooking or cleaning 
• sitting with the person with dementia, or taking them out shopping, to a café or for an activity, so you have some time to yourself 
• taking them to hospital and other appointments 
• providing you with a listening ear 

It is important that you maintain your own relationships with family and friends to avoid becoming isolated and lonely. If it is hard to leave the person with dementia at home alone or arrange respite, you could ask family and friends to come to you.

You can find out what’s available by contacting your local council, the person’s GP or social worker, or the Admiral Nurse Dementia Helpline. 

Community support might include: 

• befriending services – these are often run by churches, other faith groups or community centres. Befrienders may provide company at home, and/or take the person with dementia out 
• day centres  
• lunch clubs 
• memory cafés  
• dementia support groups  
• meal delivery
• telecare services, eg personal fall alarms – many local councils offer these schemes, which you can find out about through social services

To establish what help and support is needed, you will need to ask social services for a carer’s assessment (for you) and a needs assessment (for the person with dementia).

After these assessments, you will receive a report stating what healthcare, equipment, help at home and/or residential care are recommended. The person with dementia will need a financial assessment to see how much they will need to contribute towards the cost.

If you qualify for financial support, this is called a personal budget. You can decide whether you would like the local council to choose the care provider and pay them with your personal budget; or have the money paid directly to you so you can choose and pay your own carers. This is called a direct payment.

Financial benefits that you or the person with dementia may be able to claim include: 

• Attendance Allowance 
• Carer’s Allowance 
• Personal Independence Payment (PIP) 
• NHS continuing healthcare funding

You could also speak to other local families who use home carers and ask for their opinions.

The following tips may be useful:

• Ensure the care agency is regulated by the Care Quality Commission (England), the Care Inspectorate (Wales), the Regulation and Quality Commission Improvement Authority (Northern Ireland) or the Care Inspectorate (Scotland). You can request the latest report from the care agency
• Check that carers are dementia trained
• If the person has young onset dementia (where symptoms develop before the age of 65), ask if the carer has experience in working with younger people and understands their different needs
• Check that all carers have had DBS checks to ensure they are suitable for working with vulnerable people
• Ask for references from other families that use the agency
• Think about when you would like the carer to visit, and for how long
• Think about what tasks you would like the carer to help with
• Prepare a profile of the person with dementia, such as a life story – a record of their life that will help the carer get to know them
• Find out whether the same carers will come every day, or whether there may be several different people
• Find out what will happen if the regular carers are ill or on holiday
• Ask if you can have a trial period to see how the person with dementia and the carer get on

Some people prefer to use an independent/private carer who is self-employed, rather than working for an agency.

There are benefits to this – for example, you will have the same carer every time, and they can build a greater rapport with the person with dementia. They may also be more flexible and less rushed.

If you go down this route, ensure you take all of the factors above into account, and also consider things like what will happen if the carer is ill or on holiday, and what insurance they have in case of accidents or breakages.

Dementia UK resources

• Advance care planning
• Attendance Allowance
• Carer’s assessments
• Caring from a distance
• Financial and legal sources of support
• Guide to NHS continuing healthcare funding (CHC)
• Life story work
• Looking after yourself as a carer

Care quality inspectorates

• The Care Quality Commission (England)
• The Care Inspectorate (Wales)
• The Care Inspectorate (Scotland)
• The Regulation and Quality Improvement Authority (Northern Ireland)

Benefits

• Attendance Allowance
• Benefits and financial support if you’re disabled or have a health condition
• Benefits calculators
• Carer’s Allowance (England, Scotland and Wales)
• Carer’s Allowance (Northern Ireland)
• Personal Independence Payment (PIP)

Other resources

• Apply for a needs assessment
• Befriending Networks
• Care Information Scotland: assessment of your care needs
• Find your local social services
• Homecare Association: search for care agencies
• Hometouch: search for independent carers
• Independent Age: impartial advice to help older people live independently
• The Live-In Care Hub
• NHS guide to help and support you can get for free
• NHS guide to help at home from a paid carer