How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration

McRitchie, Robyn; McKenzie, Karen; Quayle, Ethel; Harlin, Margaret; Neumann, Katja

doi:10.1080/07481187.2012.738772

Cited by 39 publications

(59 citation statements)

References 44 publications

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“…McRitchie et al. () found that the PWID in their study wanted to be involved in discussions about death, dying and bereavement; they argued for the importance of systemic support for adults with intellectual disabilities who are grieving. However, the attitudes and assumptions shown by some participants in this metasynthesis suggest that too little is being done within intellectual disability services to educate staff of the benefits of supporting PWID to develop their knowledge, or in providing guidance about how to do so.…”

Section: Discussionmentioning

confidence: 99%

“…However, there is also evidence that being involved in bereavement rituals can be positive for PWID. Such involvement, including viewing the body, attending funerals, visiting the grave and reminiscing about the deceased, has been reported by PWID (McEvoy et al., ; McRitchie et al., ), and PWID have reported feeling proud to have been involved in such rituals (McRitchie et al., ).…”

Section: Introductionmentioning

confidence: 92%

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The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

Lord

Field

Smith

2017

Research Intellect Disabil

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 92%

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

Lord

Field

Smith

2017

Research Intellect Disabil

View full text Add to dashboard Cite

show abstract

“…It is important to avoid a disempowering perspective that paternalistically frames this population group as past or future trauma victims [5][6][7] or to over-pathologise life experience and suggest that people with intellectual disability are not resilient [8,9]. However, the increased likelihood of being exposed to environmental stressors means people with intellectual disabilities are at a higher risk of having their resilience compromised and developing mental and physical health problems including PTSD [1,10,11].…”

Section: Introductionmentioning

confidence: 99%

Trauma and Life Events in Adults with Intellectual Disability

Wigham

Emerson

2015

Curr Dev Disord Rep

102

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Exposure to adverse life events and environmental stressors (e.g. violence, poverty, sexual abuse) has been found to be high in intellectual disability populations. Notwithstanding resilience, for some people with intellectual disability, adverse life events and environmental stressors may lead to PTSD and may affect well-being in more diffuse but potentially still clinically impactful ways (e.g. challenging behaviour, obesity, substance misuse). Advances have occurred in the field of trauma in intellectual disability. More specifically, a small number of assessment measures have been developed for PTSD and a small number of studies evaluated treatment interventions such as cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR). Awareness has also increased regarding the potential life course effects on mental health of exposure to environmental stressors. While these developments are promising, the field warrants more research and development. This paper considers recent developments in knowledge on the psychological effects of exposure to adverse life events and environmental stressors in adults with intellectual disabilities.

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“…However, family members and caregivers still underestimate the extent of the bereavement process in such individuals 8–10. There is considerable scientific evidence regarding the negative effects of stressful events on the physical and mental health of the population in general,11–13 regarding the association between depressive symptoms and a progressive decline in cognitive function14 and, more specifically, regarding bereavement as a risk factor for health problems in the elderly 15–17.…”

Section: Introductionmentioning

confidence: 99%

Bereavement and behavioral changes as risk factors for cognitive decline in adults with Down syndrome

Fonseca¹,

Oliveira²,

Guilhoto³

et al. 2014

NDT

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BackgroundCognitive decline and Alzheimer’s disease often affect older adults with Down syndrome (DS) much earlier than those in the general population. There is also growing evidence of the effects of negative life events on the mental health and behavior of individuals with intellectual disability. However, to our knowledge, this is the first study investigating objective cognitive decline following bereavement in aging individuals with DS.ObjectiveThe objective of this study was to determine whether cognitive decline correlates with bereavement following the recent loss of a caregiver or with behavioral changes in a sample of adult individuals with DS who do not meet the criteria for dementia or depression, using the longitudinal assessment of the Cambridge Cognitive Examination (CAMCOG), together with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE).MethodsWe evaluated 18 subjects at baseline and over a follow-up period of 14–22 months, attempting to determine whether cognitive decline correlates with bereavement following the recent loss of the main caregiver or with behavioral changes (as assessed with the Neuropsychiatric Inventory).ResultsThe mean rate of change in CAMCOG was −1.83 (standard deviation 4.51). Behavioral changes had a significant direct influence on cognitive decline. When bereavement was accompanied by behavioral changes, the probability of cognitive decline was 87% (odds ratio 3.82).ConclusionThe occurrence of behavioral changes attributed to bereavement following the loss of the primary caregiver significantly increases the probability of cognitive decline in individuals with DS. Longitudinal comparison of the CAMCOG and use of the IQCODE appear to enrich the analysis of cognitive decline in individuals with DS. Further studies involving larger samples are needed in order to corroborate and expand upon our findings, which can have implications for the clinical management of older adults with DS.

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How Adults With an Intellectual Disability Experience Bereavement and Grief: A Qualitative Exploration

Cited by 39 publications

References 44 publications

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis

Trauma and Life Events in Adults with Intellectual Disability

Bereavement and behavioral changes as risk factors for cognitive decline in adults with Down syndrome

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