Abstract
ObjectivesThe objectives of the study are (1) to test our primary hypothesis that carers using more dysfunctional coping strategies predict lower quality of life in care home residents living with dementia, and this is moderated by levels of resident agitation, and (2) to explore relationships between carer dysfunctional coping strategy use, agitation, quality of life, and resident survival.MethodsIn the largest prospective cohort to date, we interviewed carers from 97 care home units (baseline, 4, 8, 12, 16 months) about quality of life (DEMQOL‐Proxy) and agitation (Cohen‐Mansfield Agitation Inventory) of 1483 residents living with dementia. At baseline, we interviewed 1566 carers about coping strategies (Brief COPE), averaging scores across care home units.ResultsCarer dysfunctional coping strategies did not predict resident quality of life over 16 months (0.03, 95% CI −0.40 to 0.46). Lower resident quality of life was longitudinally associated with worse Cohen‐Mansfield Agitation Inventory score (−0.25, 95% CI −0.26 to −0.23). Survival was not associated with carer dysfunctional coping, resident quality of life, or agitation scores.ConclusionsCarer dysfunctional coping did not predict resident quality of life. Levels of resident agitation were consistently high and related to lower quality of life, over 16 months. Lack of association between carer dysfunctional coping and resident quality of life may reflect the influence of the care home or an insensitivity of aggregated coping strategy scores. The lack of relationship with survival indicates that agitation is not explained mainly by illness. Scalable interventions to reduce agitation in care home residents living with dementia are urgently needed.
Highlights
We previously reported cross‐sectional, baseline data from the Managing Agitation and Raising Quality of Life (MARQUE) research programme's naturalistic cohort study where agitation was associated with poorer quality of life in care home residents living with dementia in England
Cohen‐ Mansfield Agitation Inventory caseness over 16 months was associated with lower quality of life scores over 16 months, but there was no evidence of an interaction with dysfunctional coping (P = 0.269)
In models that used family carer proxy‐rated DEMQOL score in place of carer proxy‐rated score, results were again very similar: Cohen‐Mansfield Agitation Inventory (CMAI) score predicted quality of life over 16 months in a fully adjusted model (−0.06, 95% CI −0.08 to −0.03; N = 994), and dysfunctional coping use score did not (0.35, 95% CI −0.16 to 0.85; N = 994)
Summary
A third of people living with dementia experience symptoms of agitation, such as restlessness, pacing, shouting, and verbal or physical aggression These are more common in people living with moderate and severe compared to mild dementia. People living with dementia who are agitated are more likely to move to a care home, and family carer burnout can mediate this relationship. Fewer than half of nursing home residents report good quality of life, but there is a dearth of robust research about what enables or interferes with living well with dementia, or cost‐effective ways to maintain and improve quality of life in this setting. Reflecting the difficulties experienced by family carers precipitating care home admission, within the care home, carers report difficulties caring for people with agitation. In this article, “carer” means an employed member of a care home team.Agitation may be 1 determinant of poorer quality of life for people living with dementia in care homes, because symptoms can make delivering care very challenging. This association is likely to be driven by impairments in the abilities of care home residents with dementia to communicate and the needs that they have which are unmet, as well as dementia‐related neurodegenerative changes. The Needs‐ Driven, Dementia‐Compromised Behaviour theory posits that in dementia, problem behaviours arise from unmet needs or goals, including emotional (communication, comfort, physical contact), recreational (stimulation, including touch, music; enjoyable activities), or physical needs (eg, pain relief, thirst, hunger). People living with dementia may not know or be able to communicate their wishes. People living with dementia who are agitated are more likely to move to a care home, and family carer burnout can mediate this relationship.. Reflecting the difficulties experienced by family carers precipitating care home admission, within the care home, carers report difficulties caring for people with agitation.. Agitation may be 1 determinant of poorer quality of life for people living with dementia in care homes, because symptoms can make delivering care very challenging.. Agitation may be 1 determinant of poorer quality of life for people living with dementia in care homes, because symptoms can make delivering care very challenging.3 This association is likely to be driven by impairments in the abilities of care home residents with dementia to communicate and the needs that they have which are unmet, as well as dementia‐related neurodegenerative changes.. Unaware, or inadequately skilled in communicating, a lack of understanding or attendance to these individual needs may increase agitation
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