“The hardest thing is keeping my temper and remembering that she doesn’t know what she is doing.”
That quote from a friend of a colleague illustrates only too well the challenges faced not only by Alzheimer’s sufferers but also the potential impact on their families and loved ones. And those families are not alone.
An Alzheimer’s Research UK report in 2019 revealed that some 700,000 friends and family members are caring for individuals with dementia.[1]
That raises an important issue. Whilst the focus might naturally be on finding ways to delay or slow down the onset of Alzheimer’s in an individual or to optimise their quality of life, we should not ignore the impact of Alzheimer's on families and the effect a diagnosis has on the wider group of family and friends. One US study summed up the challenges facing carers as demographic, work-related, time-related, and physical and emotional. [2]
This highlights the way in which caregiving can impact every aspect of a carer’s life. Taken together, the report comments that this can lead carers to experience increased stress levels, anxiety and depression alongside a decreased quality of life. All this at a time in which it can seem as though their loved one is ‘slipping away’ in front of their eyes.
This progressive nature of Alzheimer’s was highlighted in a Spanish review which identified three distinct phases which families may go through.[3] The first, ‘what’s going on here,’ phase occurs when families start to notice that something has changed before suspecting that all is not well and confirming a diagnosis.
The report notes that for many families the process of obtaining a diagnosis can be complex and prolonged.
That’s one reason why we at Occuity are looking towards the development of a handheld optical device that could screen for amyloid plaques, thereby helping to speed up an initial diagnosis and reduce the impact of Alzheimer's on families.
The second stage identified by the Spanish review is a recognition that ‘our life is changing’ as families become more aware of physical, psychological and societal changes in their relatives, leading to a need to adopt an ever more vigilant attitude. The final stage, ‘keeping things together,’ looks towards finding a balance between care and maintaining the personal, social and working life of the family. The report noted that the greater the balance, the better families were able to gain a positive outcome from the experience.
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