Dementia care: Research and clinical innovation.

Abstract

The focus of this special issue on research and clinical innovations within dementia care was to stimulate conversations on how people with dementia, their family members and nurses can work together to enable the development of appropriate and robust research to inform the implementation of evidence-based interventions, guidelines and policies, which encompass all health and social care settings. The vast methodological approaches and topics of studies within this special issue demonstrate that the continued need to ensure dementia remains a focus of both governments and health and social care institutions to ensure that people living with dementia are central to their care, research and clinical innovations. The first element to emerge from papers within this special issue was the inclusion of people with dementia in research (Bolt et al., 2021; Thoft & Ward, 2020). The Dementia Alliance International (2019), a collaboration of people with dementia, has been central to the movement of “nothing about us without all of us” and challenged the restrictive practices of not involving people with dementia in the development of initiatives or research (Swaffer, 2016). The need to understanding dementia from the perspective of a person with dementia is essential. People within the study by Thoft and Ward (2020) identified the feeling of time as being lost but needed to continue to look on the bright side, whilst trying to remember but forgetting. However, more importantly, people with dementia acknowledged that they still had the ability to learn although this had become more difficult. Therefore, understanding these experiences challenges traditional perceptions of people with dementia. Traditional negative perceptions were further challenged by people with dementia in the work of Bolt et al. (2021), who expressed their concerns and the continued need to be recognised as individuals, whose life has both value and meaning, and they are unique and worthy, which does not diminish as their dementia progresses and they require support and end of life care. The need to discuss future care and end of life care was identified as important, and these discussions need to occur whilst they still had the cognitive ability to be meaningfully involved in writing their own advance care plan (Bolt et al., 2021). Therefore, people with dementia and their family members need to discuss advance care planning during the early stages of dementia; nurses and other healthcare professionals need the appropriate education and training to support these difficult conversations. The second element to emerge from papers within this special issue was the continued lack of education and training for health and social care professionals to provide support and care for people with dementia (Keuning-Plantinga et al., 2020; Kong et al., 2020; Zhao et al., 2020; Zhao et al., 2020). The lack of dementia education and training for healthcare professionals impacted negatively on their attitudes towards caring for people with dementia in acute hospital settings, which impacted negatively on the care, support and information they provided to people with dementia and their family members (Keuning-Plantinga et al., 2020; Zhao, Jones, et al., 2020; Zhao, Moyle, et al., 2020). However, this issue has been addressed in many countries, where dementia training and education have become mandatory for all health and social care professionals. Furthermore, dementia training and education have been comprehensively evaluated; in the United Kingdom, a comprehensive exploration of “what works” identified common elements of successful programmes that should be included in future programmes for potential effectiveness (Surr & Gates, 2017). Essential elements of dementia education and training that have been identified within this special issue include specific knowledge and skills to support nurses caring for people with dementia in an acute hospital environment to implement non-pharmacological interventions and refrain from applying restrictive measures and medication (Keuning-Plantinga et al., 2020). A further necessary element is that of inclusivity, which enables health and social care professionals to provide appropriate care for minority groups, such as sexual or ethnic minorities, alongside the inclusion of end of life care for a person with dementia, which may involve comfort feeding (Bartlett et al., 2020; Gulestø et al., 2020; Matarasso Greenfield et al., 2020). The third element to emerge from papers within this special issue was the need for health and social care professionals to support family members of a person with dementia (Cresp et al., 2020; Gulestø et al., 2020; Kristiansen et al., 2020). This is due to the fact that over two thirds of people living with dementia live within the community in their own homes and are supported by friends and family members. As previously mentioned, inclusivity continues to be an important element and the need to reach family members from minority ethnic groups, whose understanding of dementia and available services may be a barrier that prevents them from accessing and receiving appropriate support. However, Gulestø et al. (2020) identified that healthcare professionals did not always succeed in reaching or supporting family members from minority ethnic groups because of systems within dementia care that were rigid and difficult to navigate. Therefore, nurses and other healthcare professionals should aim to understand the needs of family members from minority ethnic groups, so support and services can be provided on their terms, which address their needs. The need also remains for health and social care professionals to collaborate with family members who may become substitute decision makers for the person with dementia, when they are no longer able to make decisions for themselves. The discursive paper by Cresp et al. (2020) introduces a Nurse–Substitute Decision-Maker Partnership Framework to support family members to make complex decisions, which included five necessary domains of building trust, exploring emotions, translating quality of life, encouraging proactivity and negotiating families. Finally, the collaboration of health and social care professionals and family members can be a prime mechanism for supporting family members to implement technology to enable them to further support a person with dementia as identified by Kristiansen et al. (2020), which health and social care professionals and family members found helpful whilst preserving relational interaction and person-centred care. The fourth element to emerge from papers within this special issue was continued development of person-centred care in acute hospitals, care homes and in the community (Beattie et al., 2021; Karacsony & Abela, 2021; Kong et al., 2020; Thoft et al., 2021). Person-centred care is an essential approach to support individuals with dementia to ensure that they are cared for with respect and dignity and recognised as individuals with a life history. Person-centred care approaches have been implemented in care home settings in Denmark and Korea, and although supportive, barriers continue to be identified, which included negative attitudes of care home staff, time and insufficient resources (Kong et al., 2020; Thoft et al., 2021). Initiatives to support person-centred care in the later stages of dementia have been developed and implemented such as documentation to support a person with dementia when they are admitted to an acute hospital, such as “This is me” or “Getting to know me.” As identified by Beattie et al. (2021) in this special issue, these documents have been identified to support person-centred care, improve communication, the involvement of family members and education of staff, although a lack of a uniformed documentation across institutions inhibits the success of this approach. A further barrier to person-centred care for people with dementia is the information provided in discharge documentation as identified by Parker et al. (2021). However, the final paper within this special issue, which focused on person-centred care, identified the positive use of sense memories by sensory stimulation within a Namaste Care programme, which appeared to provide comfort, pleasure and happiness (Karacsony & Abela, 2021). This low-cost non-invasive intervention is sustainable but requires either family members or a history of the person with dementia to understand, which sense memories would be supportive. An element of dementia care that is often omitted from both research and guidelines is that of promotion of continence, although highlighted in this special issue by Burholt et al. (2020). Incontinence may occur because of the progression of dementia but can be due to other pathologies, which are often overlooked because of the fact that the person presenting with incontinence has dementia. Further research in this field, especially with the involvement of people with dementia, can support the development of clinical and practice guidelines, which has the potential for positive change for people living with dementia in the community who may experience incontinence. The last element to emerge from papers within this special issue on dementia was the inappropriate use of involuntary care, restraints, and psychotropic medication across all care settings and carers, including care provided at home by family members and healthcare professionals in residential aged care and acute hospitals (Mengelers et al. 2020; Pu & Moyle, 2020; Walsh et al. 2020). Involuntary care or non-consensual care, including psychotropic medication and physical restraints, were found to be commonplace in care for people with dementia living at home in Belgium (Mengelers et al. 2020). The use of restraints in care for people living with dementia was also identified as common practice in residential aged care (Pu & Moyle, 2020). A study in Canada identified nurses within acute care settings administered psychotropic medication to people with dementia for the safety of staff, to prevent disruption of the unit’s routine, and to prevent undesirable behaviour (Walsh et al. 2020). These papers highlight an urgent need for the understanding of decision-making processes in providing involuntary treatment and care for people with dementia, and the impact of these interventions on the person with dementia. This is essential to reduce the use of involuntary care and provide person-centred, dignified, humanistic care for people with dementia that respects their human rights. [Correction added on 25 January 2022, after first online publication: The preceding paragraph and references cited within it were added.] I am going to end this editorial by returning to a final paper within this special, which has explored the 10 Principles of Dignity and developed a questionnaire appropriate for dementia care to support and promote dignified care for people with dementia in an acute hospital setting and to ensure their human rights (Heuzenroeder et al., 2020). Human rights approach to dementia care has been acknowledged by the World Health Organisation to ensure that the human rights of people with dementia are recognised and respected. An approach recognised by WHO is that of the framework “PANEL”, which consists of elements addressing participation, accountability, non-discrimination, empowerment and legality. PANEL has been applied to develop the human rights of people with dementia; Scotland implemented the Charter of Rights for People with Dementia and their Carers in 2009 (Cross-Party Group in Scottish Parliament, 2009). Unfortunately to date, a human rights-based approach has not been widely implemented by governments or healthcare institutions around the world. Therefore, an approach of 10 Principles of Dignity in Care and the development of a robust evidence-based questionnaire will support health and social care professionals to identify, develop and deliver dignified care for people with dementia. Author declares that there are no confict of interest.