Caring for Carers

‘Caring for a person with Alzheimer’s can feel like a prison term spent in solitary confinement.’

Gran & Grandad (circa 1975)

Gran & Grandad (circa 1975)

Carers for people with Alzhimer’s are faced with five key problems:

  1. Technological Disenfranchisement carers of people with Alzheimer’s are normally their spouse or partner and are therefore of the same approximate age as the cared-for. This means that the carer has the associated disenfranchisement with: technology,  computers, the Web, and digital-life in general, as would be expected of any senior citizen;
  2. Isolation people with Alzheimer’s become increasingly dependent on their carer. This means that the carer becomes a prisoner in their own homes – unable to leave the person they care-for unattended. This inability to leave, means that the carer becomes isolated and dislocated from the communities in which they live;
  3. Care Gaps gaps in face to face support arise because support staff, nurses, and home visitors find it difficult to attend to all cases with any frequency. This means that carers who are ‘coping’ are logically squeezed out of the support that may be necessary – for their own health and wellbeing – in favour a lone person with Alzheimer’s who is seen as having more immediate problems;
  4. Information Connectivity further, both ‘family’ and professional carers are on the frontline of care for people with Alzheimer’s, and generators of much healthcare information. Currently there is a disconnect in the information available and its transmission – and intelligent aggregation – to healthcare professionals. Instead of predicting needs, or dynamically generating care plans, in a top-down fashion we should be looking for ‘emergent care needs’  generated by the data – and Q&A – produced by frontline carers; and finally,
  5. Carer Aftercare there will come a time when the carer’s role is no longer required, yet for a family member who has been caring for a loved one for a long period, this can be a traumatic, and frightening time. We need to look after the needs of these selfless individuals much better.

In general, this means that carers become isolated from their communities because support does not exist to enable them to take a daily respite from their ‘duties’ as a carer. Yet perversely, they are unlikely to be able to take advantage of communications technology which may just relieve some of this isolation. It’s my opinion that we need to plug this gap in services by removing the technical barriers to communication, thereby lessening isolation and  supporting a more social kind of living, enabling care at home to be practical and desirable for as long as the carer chooses.

I propose we use the application of pre-existing technology to carry out much of the ‘pedestrian’ functionality. Carers and health care service providers are not required to substantially modify their processes, procedures, or outputs. The unification and orchestration of these pre existing communication technologies into a seamless support system forms the novel computer science research component of the work, while the investigation around the effects on carer: uptake of services, stress, self-esteem, and wellbeing paying particular attention to smoothing the transition to institutional care, should form the research.

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