Date Revised:

This is part of the Carers Road Map online guide for anyone who cares for someone with dementia and wants to take an active role in their care.

Dementia is a complex, unpredictable condition. As the condition progresses close relatives and friends may find themselves offering an increasing amount of support to enable the person with dementia to manage their everyday life.

While caring for someone can be rewarding it can also be challenging and you are likely to find yourself having to adjust your life to accommodate the extra demands put on you. Therefore, it is important to take time out when you can, to look after your own health and wellbeing

Getting information about dementia

It can help to understand more about dementia so ask the health professionals you are in contact with to explain it. The term dementia is used to describe a set of symptoms which can include memory loss, confusion and difficulties with concentration and language. Dementia is caused when there is damage to the brain through diseases such as Alzheimer’s or the result of an event such as a stroke. There are a number of different types of dementia and a person can be affected by more than one. 
 
Dementia is more commonly diagnosed in people over 65. However it can also affect young people when it is often referred to as early-onset or young-onset dementia. See younger people with dementia on the Alzheimer's Society website.
 
For more information about the different types of dementia contact a UK or local dementia service.
 

Tips

  • Order a free dementia guide from Alzheimer's Society.
  • Contact your local carer service.
  • Contact your local dementia service. 
  • Ask questions during appointments for you or the person you care for.
  • Look for other local voluntary organisations that can help, for example Age UK.
  • Tell your family and friends they can often be a great support.
     

Life doesn’t stop with a diagnosis of dementia 

People diagnosed with dementia can live well and continue to take an active part in family and community. Putting in strategies to manage the symptoms and forward planning can help you and the person you care for enjoy life. See living well with dementia on Dementia Care.
 
As a carer you can still appreciate going out and spending time with the person with dementia. 

  • It is important that you still continue taking part in activities that you have always enjoyed together. 
  • Keeping active can help both of you keep physically and emotionally well and prevent isolation.
  • As the dementia progresses, it can be enormously stimulating for the person with dementia to feel the sensations and hear the sounds outside.
  • Taking the person you care for to a favourite park, cafe or just sitting in the garden can help stimulate their mind and bring back memories. 

The important thing about going out is to just go with the flow and try not to be disappointed if plans have to change. Even if the person you are caring for almost immediately forgets the outing, the moment has been enjoyed and the positive feelings often remain. There are strategies and ideas available which can help with having a good day out. See are you 'good to go'? on Care Uk.

Local and UK support and information services 

Making contact with UK and local organisations can be invaluable and can help ensure that you don’t become isolated from friends and family. It will give you the opportunity to meet other carers and get valuable information and advice about how to look after yourself as well as the person with dementia. 
 
Carer’s services often run programmes which cover caring for someone with dementia as well as looking after yourself.
 
There are many different sources of support and information available to carers and people with dementia. It is important to choose the right support for you.
 
Carers and those with dementia can access:

  • Helplines
  • Support and activity groups
  • Information programmes
  • One-to-one support

Talk to your memory service or GP about local carer and dementia services. 

Community care and a carer’s assessment

If you are providing, or intend to provide, any level of care for someone it is important you take steps to look after your own needs. Try not to slip into taking on more caring tasks without noticing and make sure you don’t neglect your own health and wellbeing.
 
Carers and those they care for have a right to an assessment of their needs. This is usually carried out by the local social services department. The assessments can either be carried out together or separately where this is not appropriate. They may also include any other family members either involved or affected by the situation. 

  • For the carer this is known as a carer’s assessment.
  • For the person being cared for this is sometimes known as a Community care assessment.

Getting a carer’s assessment and a community care assessment early on should give you access to local services. It also ensures that local services are aware of the important role you play in the care of the person with dementia.
 
If the person with dementia refuses an assessment or service, this does not mean you as the carer are excluded from a carer’s assessment and any available services. Carers are entitled to services in their own right.
 
It is important to ask for a review of the carer’s assessment and the community care assessment if things change. As dementia progresses it can create stress points. Your own circumstances can also change, for example, you may have concerns about your own health, employment, finances or other family members.
 
Next in the Carers Road Map guide: Legal and financial planning

Next review due: June 2017