Dignifying and undignifying aspects of care for people with dementia: a narrative review

Abstract

Background: The progressive disease trajectory makes people with dementia increasingly vulnerable and gradually more dependent on others which can lead to admission to a nursing home. Special interest in dignity in people with dementia has led to a growing body of knowledge towards promoting or hindering their dignity. Aim: The aim of this narrative review was to synthesise dignifying and undignifying aspects of formal and informal care for people with dementia within nursing homes. Method: The electronic databases CINAHL, SCOPUS, PSy-cInfo and PubMed were systematically searched with the terms 'dementia' and 'dignity', complemented with the use of snowballing and reference check. A total of 789 unique items were found. The search and selection process was structured by the PRISMA framework, and both authors formulated the criteria of eligibility. A methodological check was performed using the critical appraisal tool of Hawker. This process led to inclusion of 29 articles which were reviewed with the help of the guidelines for narrative synthesis by Popay et al. Findings: The emerged dignifying and undignifying aspects of formal and informal care are characterised by either a successful or unsuccessful process of adjustment towards changing abilities, preferences and care needs of people with dementia. Three themes appeared as undignifying aspects of care: 'Stigmatisation and objectivation', 'Scarcity and hastiness' and 'Impending estrangement and misunderstanding'. Four themes were identified as dignifying aspect of care: 'Personalisation', 'Respect, attentiveness and encouragement', 'Attention for physical care and bodily gestures', and 'Foster belonging'. Literature synthesis showed mostly relational aspects of care concerning dignity in people with dementia. Formal and informal caregivers are important in maintaining and promoting their dignity.

Dignity reflections based on experiences of end‐of‐life care during the first wave of the COVID‐19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO‐LIVE study)

“…On the level of society, our findings indicate that with the COVID‐19 pandemic, came the fear within society, stigmatisation of possible infected people, exclusion or separation of certain groups such as nursing home residents and fragile elderly. All of these are expected to influence the experienced dignity [15,17]. Some relatives state clearly that they felt that not COVID‐19 but the effect of social exclusion and inactivity had caused the death of their loves one, especially for those with dementia or Parkinson's.…”

“…Therefore, dignity‐conserving care at the end of life is considered to be person‐centred, to respect and advocate the patient's agency and to take the patient seriously at emotional and existential levels. It involves listening and sensitive communication, and encourages family presence [17–20].…”

Improving Dignity of Care in Community-Dwelling Elderly Patients with Cognitive Decline and Their Caregivers. The Role of Dignity Therapy

“…In Europe, where 30% of the population will be over 65 by 2050 [3], the impact of psychological disorders very common in old age, such as depression, anxiety, and somatoform disorders, are growing public health concerns [4][5][6]. These aspects are even more marked if we consider the problem of cognitive impairment and neurocognitive disorders (mild to moderate dementia and dementia), since these conditions markedly increase vulnerability and dependency and decrease the individual's sense of self and dignity [7,8]. Therefore, intervention improving the areas of quality of life, [9] meaning in life [10] and dignity [11,12] should be considered extremely important when implementing good clinical practice services for the elderly population, particularly with mental disorders, including neurocognitive disorders.…”

Dementia and Major Neurocognitive Disorders: Some Lessons Learned One Century after the first Alois Alzheimer’s Clinical Notes

“…Moreover, taking into account individual experiences of people with MNCD, it is necessary to understand their unmet needs during the different stages of diseases, and it is mandatory to discuss how to increase and to support their quality of life and how to sustain their autonomy and independence [ 21 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 ]. There is still an open debate on the need to support people with MNCD in living in their homes and in their environments and, when they choose to live in medium and long-term facilities, it is important to support them also in this experience [ 51 , 52 , 53 , 54 ]. Negative experiences and risks related to institutionalization are debated, also taking into account the current experiences during the COVID-19 pandemic [ 55 , 56 , 57 , 58 , 59 ].…”

“…It is also necessary to better understand social costs on individuals and on other family members [ 60 ] and how to support caregivers and family members to adapt to caregiving and to prevent negative effects of family burden [ 5 , 54 , 61 ]. There also some ethical aspects related to the overall effect of MNCD on individual’s life and other ethical aspects related to advance care planning and end-of-life care [ 51 , 62 , 63 , 64 ].…”