‘Making the Road less Rocky for carers’ When decisions about residential and end of life care have to made

‘Making the Road less Rocky for carers’ When decisions about residential and end of life care have to made

It is important to recognise that when the person with dementia goes into hospital or a residential setting the caring role does not stop. Carers will continue to offer social, emotional and nutritional support.

Key Points: 

  • Carers value support and information from professionals when having to make a decision about residential care
  • in order to plan carers need information at an early stage on the availability and costs of care
  • Carers can make a valuable contribution, in discussions about end of life care
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Date Revised: 
15/05/15

This section is particularly relevant to social care and health staff

My husband was considered to be ‘bed blocking’…the social worker told me about four different options that might be suitable for my husband but each one I looked at seemed even more unsuitable than the last, this information should be linked in to when the person gets a diagnosis…considerations of moving, financial aspects, possibilities of staying together, problems of living apart…all has to go into the melting pot and a solution gradually reached. 

Advice and support about continuing to care at home

There are a number of factors which may precipitate a need for the carer to consider residential care, these are particularly when the person with dementia is no longer safe at home, develops difficult behavioural problems or becomes incontinent. Carers value support and information from professionals when having to make a decision about residential care, as there may be conflicting views from the person with dementia, the carer and possibly the wider family. In order to save time and disappointment information on which local residential care options offer the correct support for the person they care for is vital. Carers will often have mixed emotions and benefit from emotional support during this period of change.

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Clear information on all care options

Information at an early stage on the availability and costs of different care options would help relieve some of the stress and panic when the carer is no longer able, or is unwilling to care. Sometimes carers will find themselves having to research care options in a hurry following an accident at home, a hospital stay or the failure of their own health. Carers can feel under pressure to find a place quickly when the person with dementia is ready to be discharged from hospital.

For carers of people with rare types of dementia and/ or young onset dementia, finding an appropriate residential home can be particularly difficult, it is quite possible there will be no local provision therefore it is important national as well as local information is made available at an early stage to enable more effective planning for the future.

It is important to note that when the person with dementia goes into residential care, that this is not the end of the caring role, carers often go in regularly and give social, emotional and practical support.

Active involvement of carers in decisions about end of life care

Carers can make a valuable contribution, in discussions about end of life care and can take an active role in the planning and delivery of the care needed, they know the person with dementia well, so will have insight into their wishes, There may be an Advance statement and Lasting Power of Attorney in place giving instruction on end of life care. Professionals can support carers to recognise difficult emotions they feel during this period and refer for appropriate support.

Ideally information about LPA and planning for end of life care should be given early on, following diagnosis, while the person with dementia still has capacity. Making decisions on someone else’s behalf can be very difficult and stressful, so planning ahead is vital.

Following bereavement carers may experience different emotions including loss, relief, and guilt caring will have been a large part of their life and a feeling of loss of purpose is not uncommon. Good support during this time can help the carer consider their options, for the future and prevent a deterioration in their own health.

Planning ahead and having the opportunity to discuss the possibilities, of life after caring could help ease the trauma carers may feel at this pivotal time. Encouraging carers to take time out while they are caring to maintain their social activities will help prevent further isolation when their caring responsibilities end

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