End of Life Care for People with Dementia by Downs Murna; Middleton-Green Laura; Chatterjee Jane

Author:Downs, Murna; Middleton-Green, Laura; Chatterjee, Jane
Language: eng
Format: epub
ISBN: 9780857005120
Publisher: Jessica Kingsley Publishers
Published: 2016-10-31T16:00:00+00:00

STRESSORS ASSOCIATED WITH CARING FOR SOMEONE WITH DEMENTIA AT THE END OF LIFE

Folkman et al. (1986) developed the cognitive theory of psychological stress and coping. Stress is conceptualised as a relationship between the person and the environment that is appraised by the person as challenging their resources and endangering their wellbeing. Coping refers to the person’s cognitive and behavioural efforts to reduce, master or tolerate the internal and external demands of the person–environment transaction. Pearlin et al. (1990) related this model to carer stress and coping. Carer stress is influenced by the socioeconomic characteristics and skills and resources of the carer as well as the primary and secondary stressors to which they are exposed. Primary stressors are challenges anchored directly in caregiving. Secondary stressors are related to the way the primary stressors interfere with the carer’s role and activities outside of caregiving.

Primary dementia caregiving stressors include:

•changes in the cognitive abilities of the person with dementia

•behavioural and emotional changes in the person with dementia

•changes in the relationship between the carer and the person with dementia

•changes in the functional abilities of the person with dementia.

Secondary dementia caregiving stressors include:

•the impact of caring on the carers’ usual activities such as work, leisure and looking after themselves, including their own healthcare needs

•conflict or strain in family relationships and friendships

•economic strains

•the need to make decisions on behalf of the person being cared for

•intrapsychic strains such as loss of identity and guilt.

(Oyebode 2008; Zarit and Zarit 2008)

The physical and mental health of carers can suffer directly due to these primary and secondary stressors. Health consequences include physical fatigue and exhaustion or mental health symptoms such as depression and anxiety. Chronic stress affects the body’s hormonal and immune systems, leaving carers more vulnerable to disease and infections. The effects of these can be exacerbated as carers may feel unable to take time to attend to their own physical health and emotional needs. They are also more likely to adopt maladaptive health behaviours such as smoking, drinking, a poor diet and lack of exercise (Brodaty and Donkin 2009).

In advanced dementia, stressors surface around the end of life decisions that carers need to make on behalf of their relative. These include choosing the location for receiving end of life care and deciding how to respond to medical crises that will arise (Zarit and Zarit 2008).

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