Dementia caregiving is a long and lonely road



Caring for someone with dementia or Alzheimer’s disease can be a long, stressful, and intensely emotional rollercoaster. In many cases, the spouse takes the primary caring role facing the various challenges from the moment of diagnosis to the painful journey until the end of life.


Caring for a partner with dementia is often a crushing experience of anticipatory grief. Not only are caregivers left to witness a loved one’s memories disappear as well as their skills and vitality erode, but individuals with dementia inevitably change and behave differently as the disease progresses. Sometimes, these changes are disturbing, unrecognisable and upsetting, ultimately producing an emotional wallop of confusion, frustration, and sadness for both caregivers and their partners. As such, there is no surprise that the burden of dementia caregiving can put their caring partner at increased risk of physical health problems, as many will experience high levels of stress, depression, and burnout.


A new ELSA study carried out by researchers at UCL’s Department of Behavioural Science and Health, KCL’s Institute of Psychiatry, Psychology & Neuroscience, and the South London and Maudsley NHS Foundation Trust found that loneliness represents an important contributor to the relationship between dementia caregiving and subsequent depressive symptoms in English older adults.


The study published this month in European Psychiatry used data from 4,672 partnered adults aged 50-70 living in England and Wales who took part in the English Longitudinal Study of Ageing (ELSA). ELSA is an ongoing cohort study that started data collection in 2002 to explore multidisciplinary topics relevant to the ageing process.


Joint first author, Dr Julian Pascal Saadi said: “We were interested in understanding the mechanisms through which dementia and other types of partner caregiving impact subsequent mental health. From a clinical perspective, we were curious about the psychological implications of a partnership that is increasingly revolved around care. As a key implication, our work suggests that caring for a partner with dementia can be a relationally depriving experience, and when relevant, the meaning of such a drastic relational shift should be thought about as a key part of any psychological formulation and intervention for depression”.


Joint first author, Dr Ewan Carr, said: “With this work, we benefited from the long follow-up in ELSA that allowed us to measure caregiving, loneliness, and depressive symptoms at successive waves. This large and nationally representative sample also made it possible to explore outcomes related to specific types of caregiving, such as care for a partner with dementia or with functional impairments. Overall, this study provides robust evidence to support the role of loneliness as a potential factor explaining depressive symptoms among dementia caregivers”.


Dr Dorina Cadar, the senior author, said: ‘Caring for individuals with dementia requires ongoing around-the-clock care that may impose withdrawal from paid work, socialising with family and friends, and increased levels of stress, which all in all are strong determinants of poor mental health. Many partners report feelings of hopelessness, isolation, and depression. Our work emphasises the imperative need of addressing the issue of loneliness in interventions aimed to support dementia caregivers.’


Title: The role of loneliness in the development of depressive symptoms among partnered dementia caregivers: Evidence from the English Longitudinal Study of Ageing

Journal: European Psychiatry

DOI: 10.1192/j.eurpsy.2021.20


https://pubmed.ncbi.nlm.nih.gov/33766187/