Sensory loss adds to distress for family of people with dementia
Disabling age-related chronic health conditions do not just affect the individual living with the condition, they can also affect the wellbeing of their friends and family. However, little is known about how living with multiple conditions can interact to influence the level of distress among family and friends.
If the factors that contribute to the impact of supporting a person with dementia can be identified and addressed early it could potentially reduce the need to access higher and more costly levels of care in residential or hospital settings and improve quality of life for everyone.
New research from UNSW Ageing Futures Institute and Neuroscience Research Australia (NeuRA) investigators, Dr Kim Kiely, Dr Moyra Mortby and Professor Kaarin Anstey, has demonstrated that the neuropsychiatric symptoms of dementia, together with sensory loss, can add to the level of distress experienced by family and friends.
The team had previously demonstrated that individuals with sensory impairment are more likely to exhibit the neuropsychiatric symptoms associated with cognitive decline and dementia, than adults with good levels of sensory functioning. They have now taken this research a step further to investigate the impact this can have on their friends and family.
Neuropsychiatric symptoms can include apathy, depression, anxiety, agitation and aggression, sleep, and appetite changes, and are often reported to be more distressing than the cognitive symptoms for both carers and the person with dementia. This in turn can lead to earlier entry into care and hospitalisation.
The new research, published in the journal Gerontology in June 2020, used data from the Personality and Total Health through Life (PATH) Study to examine the relationships between neuropsychiatric symptoms of dementia, vision and hearing loss, and the emotional health and wellbeing of their friends and family.
The PATH study, jointly hosted by Australian National University and UNSW Sydney, commenced in 1999 and has been led by Ageing Futures Institute Director, Professor Kaarin Anstey since 2006. It is a population-based study of adults living in the community in Canberra and Queanbeyan, Australia. The study also collects data from the partners, children and close family members of the study participants.
The team found that family and friends of people with cognitive impairments or dementia with neuropsychiatric symptoms as well as two forms of sensory loss (hearing loss and visual impairments) were significantly more likely to report distress compared to people caring for individuals with dementia and only one type of sensory loss or no sensory loss.
These findings highlight the need for better assessment and treatment of sensory disability, including advice for family and informal caregivers on strategies to manage communication difficulties, mobility limitations, and other challenges arising from sensory loss.