Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. This paper explores this phenomenon, which experts refer to as terminal or paradoxical lucidity | Alzheimer’s & Dementia | via ScienceDaily
The paper describes earlier work documenting case studies of individuals with advanced dementia, including Alzheimer’s disease, appearing to be able to communicate and recall in a seemingly normal fashion at the end of life, to the astonishment of their caregivers.
The authors acknowledge that studying paradoxical lucidity is challenging, given the fleeting nature of the event. Case studies report episodes lasting from mere seconds to at most several days for a small minority of cases. Thepaper also outlines important ethical implications of this work, including the ability of vulnerable patients to participate in research and how the observation of paradoxical lucidity might change the way caregivers interact with people with dementia.
The researchers hope their paper will help raise awareness within the scientific community to advance paradoxical lucidity research, and help validate the experiences of a multitude of caregivers.
Full paper: George A. Mashour et al. | Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias | Alzheimer’s & Dementia | 2019
See also: Moments of clarity in dementia patients at end of life: Glimmers of hope? | ScienceDaily
Alzheimer’s Society | July 2018 | Ten minutes of social interaction improves wellbeing in dementia care
Spending ten minutes interacting with people with dementia in care homes can benefit their wellbeing. The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. Carers were encouraged to discuss the patient’s interests and involve them in decisions about their care. The Improving Staff Attitudes and Care for People with Dementia e-Learning (tEACH) study, conducted by the University of Exeter Medical School and King’s College London in partnership with the Social Care Institute for Excellence (SCIE), was presented at the recent Alzheimer’s Association International Conference 2018. The study involved 280 residents and care staff in 24 care homes over a nine- month period.
Carers participated in an e-learning programme, carers who participated via Skype continued to deliver improved resident wellbeing four months after the trial was completed. Although boh treatment arms improving resident wellbeing and staff attitudes to person-centred care.
Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, said:
‘It’s unacceptable that people in care homes only get ten minutes of social interaction each day. What we need is a person-centred approach to care, that takes into account each individual’s unique qualities, abilities, interests, preferences and needs.
‘This study supports what we know from our own research – training is crucial in order to provide this type of individualised care, activities and social interactions, which can have a significant impact of the well-being of people living with dementia in care homes (Source: The Alzheimer’s Society).
University of Exeter Just ten minutes of social interaction a day improves wellbeing in dementia care
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Science Daily Just 10 minutes of social interaction a day improves wellbeing in dementia care
Therapeutic lies are frequently used communication strategies, often employed when the person with dementia does not share the same reality as the carer. Their use is complex and controversial, and a number of protocols have been produced to guide their usage (Mental Health Foundation, 2016).
The study examined clinicians’ perspective on using therapeutic lies in their daily practice and their roles in encouraging the proper use of such a communication strategy. Method: This project sampled the views of clinicians, mainly psychologists, before and after attending a workshop on communication in dementia care; they were asked whether psychologists should have a role in teaching others to lie more effectively.
Results: It was found that following a comprehensive discussion on the use of lies, the clinicians recognized they lied more than they had originally thought, and were also significantly more supportive of having a role in teaching others to lie effectively.
Conclusions: Clinicians, mainly psychologists, increased their support in the use of therapeutic lying. They considered others would benefit from the psychologists giving supervision in how to lie effectively.
Full reference: James, I., & Caiazza, R. | Therapeutic Lies in Dementia Care: Should Psychologists Teach Others to be Person-Centred Liars? | Behavioural and Cognitive Psychotherapy | Volume 46(4) | July 2018 | p454-462
Bruce Walmsley & Lynne McCormack | Severe dementia: relational social engagement (RSE) during family visits | Aging & Mental Health Vol. 21 , Iss. 12,2017
Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.
Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.
Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.
Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.
Goeman, D. et al. BMJ Open 6:e013064
Objective: To develop an inclusive model of culturally sensitive support, using a specialist dementia nurse (SDN), to assist people with dementia from culturally and linguistically diverse (CALD) communities and their carers to overcome barriers to accessing health and social care services.
Conclusions: Our culturally sensitive model of dementia care and accompanying pathway allows for the tailoring of health and social support to assist people from CALD backgrounds, their carers and families to adjust to living with memory loss and remain living in the community as long as possible. The model and accompanying pathway also have the potential to be rolled out nationally for use by health professionals across a variety of health services.
Read the full article here
Scerri, A. et al. Dementia. Published online: October 6 2016
The quality of care of persons with dementia in hospitals is not optimal and can be challenging. Moreover, staff may find difficulty in translating what they have learned during training into practice. This paper report the development and evaluation of a set of workshops using an appreciative inquiry approach to implement person-centred dementia care in two hospital wards.
Staff worked collaboratively to develop a ward vision and to implement a number of action plans. Using appreciative inquiry approach, staff attitudes towards persons with dementia improved, inter-professional collaboration was enhanced and small changes in staff practices were noted. Dementia care in hospitals can be enhanced by empowering staff to take small but concrete actions after they engage in appreciative inquiry workshops, during which they are listened to and appreciated for what they can contribute.
Read the abstract here
O’Connor, C.M. & Low, L-F. The Conversation. Published online: 8 August 2016
What is the best way to respond?
First, it’s important to stay calm. If you get upset, the person with dementia may too. Remind yourself that the person isn’t asking the questions to annoy you, but because they have a condition that causes damage to their brain.
Try to understand if there is an underlying need the person is expressing through their question. Are they anxious, worried, confused, hungry, tired?
You should respond in a way that works with the person’s current reality and frame of mind. For example, if the person believes their long-deceased husband is still alive, asking them a question such as “what does your husband do for work?” is more likely to calm the person down than if you remind them he has passed away.
It’s also good to use the environment to support your answer. For instance, in the first example above, the wife could buy a calendar, a clock, and a whiteboard, and set them up in the kitchen where they will be seen by her husband every morning. Appointments can be written on the calendar, and the whiteboard could be updated with the day, date, and schedule for the day.
Read the full article here
Saini, G. et al. BMC Palliative Care. Published online: 7 July 2016
Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.
Methods: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.
Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.
Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.
Read the full article here
By Sophia Stanworth for the Guardian
When I first came across John’s Campaign I remember thinking: “Why is this needed?” But the more I read, the more I realised that my own experience, 10 years earlier, had many similarities. My father Pag Monro – a doctor, like Dr John Gerrard, after whom the campaign is named – had vascular dementia when he was admitted to Hinchingbrooke Hospital in Huntingdon, Cambridgeshire after a fall which broke his collar bone. He was there for three months.
Had I known my father would spend so long in hospital, I would have tried to keep him at home, but hindsight is a wonderful thing. His care in hospital was always well-intentioned but not always suitable, and unfortunately he succumbed to various infections. However, I was given open access to the ward – initially to ensure that he took his medication – and I soon became a regular visitor, with some nurses even asking when my next shift was.
It is essential, I believe, for relatives and carers to have such access at all times. They should be regarded as a valuable resource who can assist nursing staff in day-to-day care. Communication and co-operation are key. Just as the patient with dementia should be seen as a person, not a medical condition, staff looking after them must have as much information as possible to ensure their care is the best it can be.
Read the full article here