Coping with the burden of caring of people with dementia

There a variation in the extent and the severity caregivers are affected by uncertainty, hopelessness, disappointment, anger, detachment and exhaustion during the dementia caregiving trajectory. The origin of this difference has been often approached from a burden perspective or from a quality of life perspective. Burden is defined by Zarit and colleagues as the extent to which caregivers perceive that caregiving has an adverse effect on their emotional, social financial, physical and spiritual functioning. Facing and adapting to the difficulties of dementia caregiving seems to be a merely individual mental capability and does not rely on the following of quick and easy recipes. It is an enterprise with social-ecological dimensions.

Factors that influence the coping capacities of caregivers towards feelings of stress, depressive and grief symptoms are:
• Behavioural symptoms of care recipient
• Poor economic situation
• Caregiver’s health and vitality
• Recognition and appreciation of their role by the person with dementia
• Friends and relatives, as well as professionals
• The existence of a supportive social network
• The presence of other resources such as own projects
Further risk factors for caregiver burden include female sex, low educational attainment, living with the care recipient, higher number of hours spent caregiving and lack of choice in being a caregiver.

Different interpretative strategies of their struggle to cope with the caregiving burden have been depicted by caregivers as efficient. Openness to reaching new balances and re-familiarizing yourself with new ways of communication and adjusting your expectations. Avoidance of reprimanding the person with dementia based on continuous efforts to be on the same wavelength as their loved ones, trying to make dementia as bearable as possible for both the person with dementia and themselves. Focusing on the tragicomic side of the situation and becoming at peace with it are valuable components in empowering caregivers. Furthermore, caregiving may be interpreted as selfless reciprocity. In the past parents took care of their children. Now it is the turn of the family caregiver. In such a way caregiving can be emotionally rewarding, because it affirms family ties, honors past service the caregivers received from the person currently needing support, and can save family resources. It is noteworthy, that carers emphasize that it is very importance for them that the person with dementia feels during the entire caring process that he or she is still a valued part of the family and of social life to the extent that it is still realistic. It may be necessary that the role of the person with dementia in social activities or events slightly alters, but maintaining a sense of social connection, fostering cognitive stimulation and social interaction are ways to resist thinking in terms of human degradation. Such a stance and efforts can be fuelled by replacing the question whether the person with dementia is in the position to recognize his/her loved ones with that of whether the person is still granted (social) recognition. For some caregivers taking a loving attitude enables them to assign meaning and a sense of dignity to this prospectless and demanding process.

Feeling heavily burdened, family caregivers long for support and supportive information. Professional caregivers are in the position to play a crucial role, support families and family caregivers and enable them to provide daily care responsive to the needs of the person with dementia. Ideally it should be a skillful person prepared to take time and attentive to the experiences and the needs of the informal caregivers; a person who understands the adversities, the uncertainties and the unpredictability of the relentless progression of dementia. Informal caregivers feel in a number of cases that they are more knowledgeable about managing daily life with their person with dementia than the professional caregivers, whilst the limited task interpretation of the latter and the dense, net of regulations, which is often experienced as burocratic, incomprehensible and intimidating, undermine fruitful cooperation between formal and informal caregivers. On the other side, family caregivers feel very grateful for being provided with valuable information and advices regarding health care system, as well as with legal, financial and individual and family counseling. Moreover, they highly appreciate a timely detection/signaling of the need for support before family caregivers realized or dared to describe their needs and concerns and ask for help.