Carers – What They Do and How to Feel in Control

All people with advanced dementia need a carer to support them at home.  They almost all need 24 hour supervision although it can sometimes be possible to pop out for an hour or so to get to the shops.  Even for such short periods you will often need someone to sit in and keep an eye on them, or at least have some sort of remote control listening device linked to someone nearby.

Once the main carer has been identified, the next thing to sort out is who does the extra support and how the main carer is helped and looked after.  Sometimes the main carer may be someone with disability themselves.  If they can direct and coordinate the work of others, people with severe physical disability have managed to make things work well.

Paid carers usually need to be physically strong and are often therefore young.  While some may seem harsh or unsympathetic there are very many wonderful, caring and compassionate carers who do excellent work.

They may often be a bit unrealiable at first – it takes time to get used to the needs of the individual and to get to know the set-up. After a while the less good ones often leave, while the good ones become indispensable friends and wonderful helpers in the work of caring.

Carers can come from several sources:-

  • Via Social Service Care Managers
  • From care agencies
  • By private arrangement with the main carer

Social Service Arranged Care

These carers are arranged by Social Service Care Managers  when the individual cannot afford to pay for the care they need out of their own savings.  The benefit of this route is that all care is set up, properly contracted and all carers are employed by the council or care agencies and therefore have gone through security checks etc.

The down side is that relatives often report that the care provided is not very flexible and that carers’ work cannot be varied to meet the varying day to day needs of the patients.

For example, if the carers have been told to come and toilet the patient they may stick rigidly to this instruction even if the person has just been to the toilet, and will sometimes do that and nothing else.  Once the care plan is finished they are gone.

Care from Agencies

Care provided by agencies, but commissioned through Social Service Departments tends to present the same probelms as Social Service packages.  However, if the carer pays directly for this kind of care, it does tend to be more flexible, and there is more scope to meet the individual needs of the person concerned.

The hourly rate is higher than that for private arrangements, as you have to pay the agency as well.  But the carers generally do come with a management system and should have had police checks etc.

By Private Arrangement

This provides the best and most flexible care for some. One carer advertised in the local paper and had 50 responses, from which he was able to appoint several carers.

By paying directly, you can vary the hours and work according to need, but you need to exercise judgement and caution, as these people may not have undergone the Police checks carried out on carers who are employed by Social Services or professional care agencies.  There is therefore an added element of potential risk.