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Unsung Heroes – we remember their love when they can no longer remember

Dorcas Eden
Account Director
Hall & Partners Health

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There have been positive developments in the dementia field this year, particularly in our understanding of Alzheimer’s disease (AD) and the dementias, the relative impact of risk factors, and better diagnosis techniques. A group of researchers at the University of Bari in Italy, for example, have just developed an AI algorithm that can spot tiny structural changes in the brain caused by the disease up to a decade before symptoms even appear, making it a potentially effective tool for early diagnosis.

However, despite these developments significant unmet needs remain in adequately supporting AD patients and, importantly, those who care for them. On World Alzheimer’s Day, we should therefore recognise the carers who play a crucial role in the world of the dementia patient, including their treatment and care. As healthcare systems evolve it’s essential that they are engaged and supported.

The role played by caregivers is often unrecognised and unappreciated by society. As the amount of dementia sufferers continue to increase, there’s a corresponding increase in the number of carers. The figures are of staggering proportions: this year the Alzheimer’s Association reported that >15million people in the US provide unpaid care for people with AD or other dementias (usually a spouse, family member or friend). In 2016 this equated to an estimated 18.2 billion hours of informal (unpaid) assistance (~21.9 hrs p/w per caregiver), a similar amount to the direct medical and long-term care costs of dementia in 2010. Compared to other conditions, caregivers to AD suffers have to provide extensive support and help with the activities of daily living (e.g. bathing and feeding), and also frequently provide care over a longer period of time.

Caregivers can be found across all age-groups and are more commonly female (~60%). The AD Society highlight ~2 in 100 8-18 year olds provide help, ~1 in 4 caregivers are in the “sandwich generation” (caring for children and an aging parent) and ~1 in 3 caregivers are 65 years or older.

As healthcare systems evolve, it will be pivotal to have effective interventions and support structures

There is perhaps growing awareness on the position of the caregiver, with the impact of AD and other dementias on caregivers being portrayed in the media. The 2014 film Still Alice, starring Julianne Moore, highlights the varied and complex nature of the disease and its devastating impact on the protagonist’s family. AD can commonly cause personality and behavioural changes which can be highly challenging for family caregivers, with patients often requiring more support and supervision as the disease progresses. Worsening symptoms have a profound impact on the caregiver, with increased levels of depression and emotional stress, not to mention the financial burden. Caregivers are 6x more likely to suffer with depression vs. their age-matched non-carer equivalent, and the caregiving role can also impact their physical health.

Fortunately, there are some assistance and support available to caregivers. For this to be successful it’s essential that: the caregiver is actively involved; support is tailored to the individual; it can evolve along with progression of the disease; and ideally it assists both the caregiver and the patient. Such support commonly provide caregivers with new skills and resources – social, emotional and psychological. For example, caregivers can be taught cognitive techniques, such as the Montessori Method, to help AD patients re-engage with the world and maintain skills like the ability to feed themselves.

As healthcare systems evolve, both in the UK and the US, it will be pivotal to have effective interventions and support structures for AD – as much for the carers, the unsung heroes who look after their loved ones, as for those they love, the patients.