Complicated grief - how common is it?
Last updated on 28th January 2016
I recently wrote a blog post "Grief is our natural human response to bereavement" where I said that mourning may well involve powerful feelings of yearning, disbelief, anger & depression. When we have lost someone who has been very important to us, we gradually need to learn to live without them. Reconfiguring our inner emotional lives and our outer activities can be such a challenge. Mostly though people manage. It may be hard, but like the body healing after injury, emotional pain also resolves as we hold our loved ones in our hearts but engage more fully again in our lives. Sometimes though after physical injury, wounds don't heal adequately. Maybe there is infection or non-union of fractures. In these situations the healing process may need help. In the same way, grief may sometimes not resolve naturally as it should. If the yearning, anxiety, pain & deep sadness are too extreme or are not showing signs of lessening six months or so after bereavement, then it's wise to consider seeking additional skilled help.
How often does the natural process of grieving get stuck in this way? What is "complicated grief" and how frequent is it? How often are health professionals likely to meet people struggling with this disorder? How can we recognise it and what can be done? Back in June, I went to an excellent two day workshop with Professor Kathy Shear on complicated grief. I wrote a couple of blog posts about the workshop and the second goes into a good deal of detail about how one can screen for and diagnose the disorder - see "Kathy Shear workshop on complicated grief: identification". But how common is it? The simple answer is "Worryingly common". One of the best estimates is Kersting et al's survey in Germany - "Prevalence of complicated grief in a representative population-based sample" - which assessed 2,520 people aged 14 to 95 years old face-to-face. They found an overall prevalence of 3.7%, rising to 6.7% in those who had suffered a major bereavement. The year before Fujisawa & colleagues had reported on a survey of 969 Japanese adults aged 40 to 79 via self-administered questionnaire - "Prevalence and determinants of complicated grief in general population". They found 2.4% with complicated grief and 22.7% with subthreshold CG symptoms, but their sample involved a narrower age band and somewhat surprisingly, they excluded bereaved respondents who had lost a child. Concerningly they noted "Complicated grief was maintained without significant decrease up to 10 years after bereavement" and Stammel et al have found persistence over even longer time periods. Unsurprisingly in older populations who have suffered more bereavement, CG is more frequent, so Newson & colleagues reported a prevalence of 4.8% in a survey of 5,741 Dutch people aged over 55 - see "The prevalence and characteristics of complicated grief in older adults". Interestingly they found that prevalence peaked at 7% in those aged 75 to 85. It was also noteworthy that, although prevalence of CG was higher in women than men, this seemed only to be because more women than men had suffered bereavement. Of the 5,741 surveyed, nearly 20% reported actively grieving ... and of this near 20%, over a quarter were diagnosed with complicated grief.
Of these various general surveys, the Kersting finding of an overall prevalence for complicated grief of 3.7% is probably the most useful. Compare this with a global point prevalence of 4.7% for major depression, a UK prevalence of 1.7% for panic disorder, and a US 12-month prevalence of 1.2% for OCD. Complicated grief is clearly a huge problem - a 3.7% prevalence rate translates to about 2.4 million current CG sufferers in the UK and nearly 12 million current sufferers in the US. Here in little Scotland, we have approaching 200,000 people with CG - so the average general practice has approximately 200 current CG sufferers. I bet that very few have been identified and even fewer are likely to be receiving adequate treatment (Shear & colleagues recent large treatment trial - currently in press - found antidepressants were no better than placebo for CG treatment). Remember too the Fujisawa finding that complicated grief tends to be chronically persistent even 10 years after bereavement (see above), and the associated increases in suffering, additional psychological disorders, greater use of health services and increased death rates - see Prigerson's "Traumatic grief as a risk factor for mental and physical morbidity" and Stroebe's "Health outcomes of bereavement".
Unsurpisingly, surveys in more "at risk" populations show considerably higher rates of CG. So Guldin et al, working in a palliative care unit, tested for complicated grief in family caregivers six months after the death of a relative through cancer. They found 40% were suffering from CG (with less than half receiving bereavement services). The problem is much bigger than this though - there are now a series of studies assessing CG prevalence in general psychiatric outpatients. One of the earliest papers is a 2001 study from Canada - "Prevalence of loss and complicated grief among psychiatric outpatients" - which reported "About a third of all patients who came to the clinics met the criteria for either moderate or severe complicated grief. The average time since the loss was about ten years, indicating that these patients had long-term complicated grief." Naively I would have expected "death of a partner" to be the most important contributor to high CG prevalence. Far from it, the authors wrote "The types and proportions of the most troublesome losses were the death of a parent (110 patients, or 47 percent), a friend (33 patients, or 14 percent), a grandparent (23 patients, or 10 percent), a sibling (14 patients, or 6 percent), a partner (nine patients, or 4 percent), a child (seven patients, or 3 percent), or other (38 patients, or 16 percent)." In a later 2005 paper - "Screening for complicated grief: when less may provide more" - the same research group reported that just two questions identified nearly 90% of patients with and without CG. The questions were "Pictures about it popped into my mind" or "I tried not to think about it" - and I have included these queries in a more general 15 item life events questionnaire, which is downloadable as a Word doc and as a PDF file. More recent studies have found somewhat lower, but still worrying, psychiatric outpatient prevalence levels. Sung et al studied US depression patients to assess how many scored at or above 25 on the widely-used "Inventory of complicated grief" (downloadable here as a Word doc and as a PDF file). They found 20% qualified as suffering with CG. More recently still, Pini & colleagues screened an Italian sample of psychiatric outpatients suffering from mood and anxiety disorders. They found a CG prevalence of 23% in this population. As the recent paper "Emotional response patterns of depression, grief, sadness and stress to differing life events" shows, other kinds of loss (like relationship break-up, serious illness & financial crisis) can result in grief responses, but bereavement definitely seems to be the most common cause of CG. So for those of us working as psychotherapists and counsellors, probably 20 to 25% of our clients are likely to be suffering from complicated grief - typically mixed in with other disorders, persistent over many years, and likely to involve losses of parents, grandparents & friends (rather than just partners).
I plan to write again soon about helping people suffering with Complicated Grief. Antidepressants seem of little use, and more effective forms of psychotherapy currently include a trauma-focused approach.
Prolonged grief disorder in recent mothers who lose a relative
Submitted by Alba Valderrama Martinez (not verified) on Sat, 14/03/2020 - 09:04.
Hi there, I am really interested in this post, as I am doing my PHD in women during the perinatal period who go through grief of one of their relatives ( excluding their babies or kids) and need to deal with the postpartum period at the same time that the bereavement. I am a midwife, and I have seen these situations more frequently than I expected. They are in big risk of develop a PGD syndrome. I am finding difficult to find an estimation of how many women who through grief within a year of their perinatal period. Do you know who o which organisation I can contact to get these details? I am guessing than the closest prediction for me would be applying the 20% of PGD in the whole population in the amount of women delivering in my area in a year... but that is not completely accurated.
Thank you so much for all the information in the post, it was really useful.
Kind Regards.
Prolonged Grief Disorder in Recent Mothers
Submitted by James (not verified) on Mon, 23/03/2020 - 18:49.
Hi, I'm sorry but I don't know the answer to this. It may be worth contacting Kathy Shear's New York 'Center for Complicated Grief'. Good luck with your Ph.D!