Last week a story hit the headlines about how Jeanette Maitland’s husband Ken, who was living with dementia, had been given 106 different carers during the last year of his life. Mr Maitland, from Aberdeen, had been allocated two carers four times a day to help his wife look after him at home, but instead of regularly seeing familiar faces, the couple were confronted by a stream of new care givers, which would be baffling enough for most people but even more distressing when the person receiving the care is living with dementia.
Whilst the understanding of dementia has improved significantly in the last ten years since my father was diagnosed, the fundamental inability to grasp some of the most basic facts about this disease remain all too prevalent, and the point about continuity of care is one such example.
It cannot be overemphasised just how important it is for people with dementia to receive all, or at least the vast majority of their care, from someone (or a very small group of people) that they know and have clearly formed a bond with. As communication becomes ever more challenging, known and trusted carers become the best chance someone who is living with dementia has of articulating what they are feeling, needing and wanting, and having that care provided in a way that they respond well to.
Familiarity, warmth and trust between a carer and the person they are caring for also helps to remove fear in the most vulnerable people, promotes calm and wellbeing, and provides dignity and respect during the provision of the most sensitive personal care. It can also add some much needed love and laughter into a person’s life in the most difficult times.
In the case of my father, he experienced significant upset when he was admitted to his first nursing home some 8 years ago. Our involvement as a family played a huge role in helping him to settle into his new environment, but ultimately it was a highly trained and intuitive nurse who spotted how dad responded particularly well to one carer, and then moved that carer onto dad’s unit just so that he could permanently work as his keyworker, that made the greatest difference. This carer became dad’s best friend, and as my father's dementia progressed, he became the voice dad didn’t have, spotting what he wanted and needed in the times we weren’t at the home, and crucially also providing a link between dad and his family during those periods.
Dad’s positivity towards this carer continued until the last time he saw him, two days before dad passed away, and proves how bonds are formed and never broken, no matter how much cognitive impairment exists.
That Mr Maitland was denied the chance to experience how continuity of care could have dramatically improved his wellbeing is shameful. Anyone actively involved in the care of a loved one with dementia quickly comes to appreciate how something as simple as having the same person regularly looking after their relative makes such a tangible difference, not only to the quality of life of the person with dementia but also the peace of mind that you feel as their family.
Sadly care workers are not valued as much as they should be in our society, and as a result it is often a profession where staff retention and longevity of service is at a premium. Mr Maitland’s experience may be an extreme example of how the system failed to provide him with even the slightest continuity of care, but it also represents the severe lack of understanding about just how vital this aspect of care provision is. The people with the skills to deliver such a specialised and personal service should be supported, and actively enabled, to perform their care giving with the same group of patients every day that they are at work.
At some point in the future I will post about the problems faced when you go from having such continuity to losing it, irrevocably. A bit like a divorce that neither party agrees to or wants!