Date Revised:

This is part of the Carers Road Map online guide for anyone who cares for someone with dementia and needs more support.

The importance of getting information and advice 

As a carer you are likely to come into contact with a number of different professionals. They may check you have all the relevant information you need, but if you are not sure about something, just ask. As the needs of the person you care for change, it is important to get good quality information and support. This will help you keep well and continue to care effectively.   
 
It is really important to make provision for the future while the person with dementia still has capacity to contribute. These conversations can be emotionally difficult, but it is important to understand the wishes of someone you care for. Health interventions, housing and care options as well as financial issues, are all important things to plan for. Putting provision in place and discussing wishes early can save a lot of time and stress in the future. It ensures as far as possible, the wishes of the person you care for are followed through.
 
If you have not already considered a Lasting Power of Attorney, Advance Statements or Advance Decisions, it is really important to do so.

Getting advice about coping with dementia

If you are concerned about whether you are doing or saying the right thing when caring for someone with dementia you can get help from your local carers or dementia service or the Dementia UK Admiral Nurse Helpline

Communicating and stimulating someone who has dementia can be difficult. Memory and concentration are two major areas affected by the condition and loss of these can make a person frightened, confused and anxious.

  • Keeping to routines and equipping yourself with some strategies can help. See looking after someone with dementia on NHS Choices.
  • There are some simple ways of making your home dementia friendly which can relieve stress and anxiety for you and the person you care for.
  • Using memories from the more distant past, creating memory boxes and living in the moment can all help.
  • People with dementia People with dementia tend to remember feelings, better than  facts; for example it is better to say ‘put you coat you will feel cold and wet’, rather than, ‘you need a coat it’s raining’.  

How to get support and advice

Support, advice and treatment can come from a variety of sources. Your GP should be able to advise which would be most appropriate. It can be reassuring to have a single point of contact for further support if needed. It can be helpful when you come in contact with a new person or organisation, to make a note of their name and number so you can easily contact them in the future.  See how health and social care professionals can help on Alzheimer's Society.
 
You can access some services directly yourself. These include your local carers service, Alzheimer’s Society and Age UK. For some services however, such as community mental health teams, your GP will need to make a referral.
 
As the dementia progresses you may find it beneficial to receive more information and advice on how to help manage the symptoms and changing behaviour of the person you care for. It can be helpful to repeat information sessions you may have attended at an earlier stage, or get in touch with your local carers or dementia service for ongoing support or speak to an Admiral Nurse.
 

Tips

 

Help with managing household tasks 

As well as managing the routine health and care needs of the person with dementia you may find you are increasingly taking over sole responsibility for many of the household tasks, or taking on tasks you weren’t particularly involved with before. These include banking and other administrative tasks , cleaning, gardening and household maintenance, driving and laundry (which may increase if the person you care for becomes incontinent).
 
If you start to find you are not managing with all the day-to-day tasks alongside caring you can request a carer’s assessment or contact your local carers service for advice. This will allow you to explore options for outside support, such as laundry services, or employing a cleaner.
 
To help with the costs of caring it is important to make sure you and the person you care for are receiving all the financial help you are entitled to. As the person you care for needs more support their entitlement to disability benefits can increase. Talk to your local carer service or advice service for more information. Also see our money and benefits section.

Getting support when the dementia progresses 

As the dementia progresses you may need extra support and regular breaks from caring. Some carers do find they reach a point where they are no longer able or confident to continue with the caring role. 
 
If you feel you are becoming very tired or not managing:

The more demanding your caring role, the more important it is that you receive support. This may include regular breaks or, as it is often referred to, respite. Respite can come in many different forms from a few hours weekly, to longer one-off breaks. Breaks can be taken with the person you care for or separately. The important thing is that you get a break from the normal demands of life. The break should primarily meet your needs as a carer although the person with dementia may also benefit.
 
You may reach a stage where, however much you want to continue to care at home, it may not be practically possible. start thinking about residential care for the person you care.
 
Stepping back can often have a positive effect on your relationship with the person you care for as a lot of the everyday strain of caring is removed and you can spend time enjoying one another’s company. If a person moves into residential care, you are still able to make a valuable contribution to the person’s care. Friends and family often play an important role in the social and emotional wellbeing of the person with dementia.
 

Tips

  • Contact your local social care or carers service to request a carer’s assessment and community care assessment.
  • Be honest in your carer’s assessment about your own health as it may help you to receive more support.
  • If you have already had a carer’s assessment or a community care assessment in place, and things have changed, request a review.
  • Ask for a referral to the local community mental health team if you are struggling with changing behaviours.
  • Don’t feel guilty about taking a break, make sure it is the right break for you as the carer.

Getting help with personal care at home 

Understandably, some carers and the person they care for, can be apprehensive about accepting outside help. However, getting support and taking a break will help you to keep well and able to continue to care at home for longer. For some carers, if caring becomes physically impossible to manage, getting outside help is essential.
 
When the time comes to introduce outside support, it can help to do so gradually. People with dementia have very specific needs and can be particularly sensitive to change, often responding badly to new people and environments. Having information early on will enable you and the person with dementia the opportunity to explore different types of care.
 
The care and support system and regulations around whether you need to pay for care, are complicated. Therefore, it is important to get good information, from a UK organisation or a local carers or dementia service.
 
If you are considering getting help for the person you care for, often known as replacement care, it is important you have confidence in the service. Ask the provider whether the staff have undertaken specific dementia training and if the care staff and timings of visits will be consistent. Carers Trust and Age UK have some excellent guides on choosing care, and what questions to ask. You can also use the CQC (Care Quality Commission) website or telephone them to check availability, and standards of care in your local area.
 
Next in the Carers Road Map guide: Different types of care options