The Morse Code
Our development worker Ghazal shares her experience as an administrator on our empowerment project.
Trent Dementia charity is a charity “trying to improve the quality of life for people living with dementia” (Trent Dementia Services Development Centre, 2019). The Life with Dementia empowerment project was initiated by the Trustees and the Project Manager to empower people living with dementia and their carers (Trent Dementia Services Development Centre, 2018). It was led by a group of advisors living with dementia who met monthly and planned the event incrementally. This project was different from other projects, because most events are led by professional for the service users. This project helped empower people living with dementia to speak about their needs and challenges to professionals. In the Life with Dementia event on November 14th 2018 professionals learnt first-hand what their service users think. Also, other people living with dementia saw that having dementia does not mean losing one’s voice. The project can inspire other projects in Nottingham area.
In summary, I think Life with Dementia project is an example of empowerment driven by a recognition that person centred care and support has been the direction of travel for some time. When we embarked on this project and began consulting with people living with dementia, as advisors, in our Core Advisory group, I thought it would be more general consultation over the outline and their needs. I began the process thinking that we would need to listen to people living with dementia as they express their needs and then we need to go and make them happen. What happened was that people living with dementia not only expressed their needs, but also helped with making it happen by helping with talking to GP surgeries their friends and peers about the event, giving flyers to supermarkets, cafes, restaurants, libraries, and other organisations in town, chairing the event, leading the conversations at the event, inspecting the venue for suitability before the event and much more. Of course, the Project Manager, Trustees, volunteers and I were there to support, but the main contributor, leader and planner of the event was the Core Advisory group who consisted of People living with dementia. I think the main factor that contributed to such empowerment was a systematic willingness in the charity Trustees and Project Manager to listen to People living with dementia and to empathise. Below I explain how this process of empowerment unfolded from my perspective as an administrator.
As an administrator in a mental health charity taking minutes of meetings and writing the correspondence, I can observe people’s behaviour and their different styles of communication. Encouraging such observation is useful for the organisation because armed with the knowledge and experience of showing empathy and resolution of conflicts, the organisation’s first point of contact can appear more helpful and empathic, service user’s needs can get referred to right helpful resources easier and faster at their first point of contact, and generally helps running the organisation more smoothly. Such observation is important, because people who come to the organisation seeking service will be more satisfied after talking to or corresponding with the administrator. Using the skills necessary, the administrator can put people at ease, and start a trusting relationship with the service users.
Different services try to offer help to people living with dementia. They all seem to strive for: increasing the quality of life of people living with dementia through increasing resiliency by offering empathy, whether it is through assistive technology, empowerment projects, health services, rehabilitation programmes, peer support groups, or even prescribing medication. Through the course of Life with Dementia project, I found that the process of empowerment involved creating a safe place for people living with dementia to consult about and design an event in order to be able to talk to people in their communities, including professionals and service providers about their needs and priorities. This has been different to other services I have experienced and the experiences shared by people in the core group in the respect that other services do not seem to consult in such detail with people living with dementia nor over such a time period. In addition, supporting people to lead on the delivery of services is also innovative and shares its approach with the DEEP network which is independent and led by members of the network rather than an organisation.
As people living with dementia began to see the outcomes of their work in the core group- for example participating in publicity for the event they had designed or talking to a group of professionals, I could feel their self-confidence rising. They went on BBC radio to talk to the public about their plans for the event; they talked to a group of professionals at the event about what they saw as challenges in health services.
As Johannssen et al (2018) mention, “To have strong confidence gives resilience and protects the self.” The power to be able to believe in oneself and being able to say: “This is a disease, and not my fault. It is just the way it is (p.5)” as one of the informants of their study put it.
This project supported the concept of asset-based models which focus on people’s strength, abilities, resources, and capacities, as Rahman et al (2018) suggest. By focusing on the capacities of people living with dementia who were invited to be part of the core advisory group and reducing focus on the deficits in memory and language, I saw the self-esteem, happiness, assertiveness and motivation among them increased. A couple of people in the group had previous experience of participating in peer support groups e.g. DEEP, tweeting about dementia, writing blogs, and recording their experience for Dementia Diaries. Two others lacked such experience, but they were also involved with Alzheimer’s Society’s groups and initiatives. As time passed and conversations developed, people became more vocal first about the problems that they saw existed in the health services, and negative experiences they had. Gradually conversations developed around planning for event and became more solution and resource focused. They realised they had lots to contribute to conversations in the event by introducing the project, leading the conversations in different rooms, greeting people, planning the programme of the event, which services to invite to have a table, etc. They expressed their need for a quiet space during the event, one of the core members visited the visited the venue before the event, asked for the floor map, consulted with the other members in the core advisory group, and finally decided to allocate a room in the building to be the quiet space. One of the family members volunteered to help with bringing calming music and cushions for the room. The process involved expression of a need/challenge, using their resources and consultation with peers to find a solution, asking for help, finding a temporary/permanent solution, and action.
When patients go to hospital or to a health professional, it usually is because of an ailment. A person who is suffering or is in pain, usually feels low as a whole; low self-confidence, low mood, and frightened, especially after hearing about the diagnosis of a progressive neuro-degenerative disease (Josephs et al, 2009). That begs the question, “What support is available to people living with dementia after diagnosis?” To which people living with dementia in Life with Dementia event responded, not much. One of the people in the core group said that she offered to go to memory clinic to offer support to those who receive dementia diagnosis on the day. She said that she could be in a separate room and offer her experience as a support to those people who receive diagnosis. It might help them not to lose hope. But, unfortunately, she said this offer was not met with enough enthusiasm by health professionals.
This picture shows that, as Maki et al (2019) point out, “communication support, which is indispensable for persons with dementia and their family members and caregivers, requires the unconditional acceptance of persons with dementia.” Such empathic communication if systematically applied within an organisation in relation to people living with dementia can be one of the main contributing factors in their journey towards empowerment. Of course, dementia is associated with progressive deterioration of memory and other cognitive functions, e.g. reduced capacity for empathy as a hallmark of fronto-temporal dementia (Eslinger, Moore, Anderson & Grossman, 2011). But as Sturm and colleagues (2013) found, mild cognitive impairment and Alzheimer’s disease comes with heightened emotional contagion, as a quantifiable index of empathic reactivity that is also present in other species, like human infants, birds, and nonhuman primates. Emotional contagion helps with the spread of emotions across individuals, for example, the person living with dementia mimics another person’s emotions. As more brain cells get destroyed, this emotional empathy gets stronger and the person living with dementia might become more vulnerable to the feelings, words, and behaviours of others (Hughes, 2013).
When people living with dementia, as a chronic condition, seek help and advice from health professionals, it is useful if the advice and help offered by them enhances their self-management skills. Unfortunately, it seems that, as Coulter et al (2008) put it, too often clinicians and patients interactions tend to promote passivity and dependence, instead of self-reliance, “thus sapping patients’ self-confidence and undermining their ability to cope (p.4).”I think with Dementia Friends, Dementia Diaries, DEEP peer support groups, and research studies (e.g. Petty et al, 2018) conducted in the healthcare system show that the healthcare system is going towards a person-centred care. The system is gradually recognising the emotional needs of people living with dementia, their vulnerability and tries to respond appropriately, e.g. reassurance, offering tea and holding hand.
Farrar (2014) describes three core interrelated elements in person-centred care: a holistic approach to patient care that considers an individual’s needs as a whole; tailors support according to the individual’s personal priorities and needs; and emphasises a collaborative relationship between patients and the professional who care for them. Such collaboration empowers the patients to be equal partners in their own care. Such empowerment helps with self-management and self-confidence of people living with dementia. Life with Dementia project endeavoured to empower people living with dementia through peer support and raising their self-confidence through showing empathy.
It seems there is a growing concern in society about hearing each other’s voice and helping each other come out of loneliness and express their needs, for example through Mental Health First Aid courses, Dementia Friends sessions, and Campaign to End Loneliness. I think society has been striving to promote empathy, cooperation, and non-judgmental attitude for a long time. And, as Parsons et al (2010) empathy is one of the factors that promotes patient engagement in consultation, especially when patients were presenting with mental health problems.
Empathic communication helps health professionals to empower people living with dementia, share decision-making with the service user, and to increase trust and security within doctor-service user relationship. So, the question is how to encourage communication with people living with dementia to become empowered and increase their assertiveness in expressing their needs and self-confidence.
The principles of Person-centred care outlined by National Institute for Health and Care Excellence (NICE) guidance (2018) emphasises “the human value of people living with dementia (regardless of age or cognitive impairment) and their families and carers; the individuality of people living with dementia, and how their personality and life experiences influence their response to dementia; and the importance of the person’s perspective” (p.10).
NICE’s emphasis on the human value of people living with dementia regardless of age or cognitive impairment reminds me of what Carl Rogers (1980) said in his book A Way of Being:
“… I have had the fantasy of a prisoner in a dungeon, tapping out day after day a Morse code message, “Does anybody hear me? Is anybody there?” And finally one day he hears some faint tappings which spell out “Yes.” By that one simple response he is released from his loneliness; he has become a human being again. (p.10)”
As Rogers (1980) acknowledges, there are a lot of people living in private dungeons today and one needs to listen very sharply to hear the faint messages from the dungeon. As the faint messages get heard, they become louder and more confident. I witnessed such a transition in voice in Trent Dementia’s core advisory group. Two people who joined in initially had a louder voice than the rest. As time progressed, I observed how the other two became more confident and emphatic in voicing their preferences and needs. Through this project two people living with dementia felt empowered to start blogging about their experience and set up their own Twitter pages. Their blog posts are being published on Trent Dementia charity’s website regularly. They initiated the first DEEP peer support group in Nottingham with their friends.
So, the common starting point for facilitating empowering communication seems to be trying to “listen deeply to someone and really hear what they are saying (UK Network of Dementia voices, March/April, 2019, p.1).” DEEP, Dementia Voices seems to be founded on such a principle: to listen deeply to someone living with dementia and really hear what they are saying.
I think the next step is to see how empathic communication can be facilitated between people living with dementia in different stages of the disease within a group. “I want to speak, please” cards used by DEEP groups might be one of the contributing factors.
Coulter, A., Parsons, S., & Askham, J. (2008). Health systems and policy analysis: Policy brief: Where are the patients in decision-making about their own care? The WHO Regional Office for Europe: Copenhagen, Denmark. Retrieved from https://apps.who.int/iris/handle/10665/107980
Eslinger, P. J., Moore, P., Anderson, C., & Grossman, M. (2011). Social cognition, executive functioning, and neuroimaging correlates of empathic deficits in frontotemporal dementia. The Journal of neuropsychiatry and clinical neurosciences, 23(1), 74-82.
Farrar, M. (2014). An inquiry into patient centred care in the 21st century: implications for general practice and primary care. London: Royal College of General Practitioners. Available at: https://www.scie-socialcareonline.org.uk/an-inquiry-into-patient-centred-care-in-the-21st-century-implications-for-general-practice-and-primary-care/r/a11G000000AxLPFIA3
Hughes, V. (28 May 2013). With Alzheimer’s Comes Empathy. National Geographic. Retrieved from https://www.nationalgeographic.com/science/phenomena/2013/05/28/with-alzheimers-comes-empathy/
Johannessen, A; Engedal, K; Kristian Haugen, P; Dourado, M.C.N & Thorsen, K. (2018). “To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone, International Journal of Qualitative Studies on Health and Well-being, 13(1), pp.1-13. doi.org/10.1080/17482631.2018.1490620
Josephs, K. A., Ahlskog, J. E., Parisi, J. E., Boeve, B. F., Crum, B. A., Giannini, C., & Petersen, R. C. (2009). Rapidly progressive neurodegenerative dementias. Archives of neurology, 66(2), 201–207. doi.org/10.1001/archneurol.2008.534
Maki, Y., Iritani, S., Terada, S., Hattori, H., & Suzuki, T. (2019). Communication support for persons with dementia through ‘Self-Management of Autonomous Interdependent Life Empowerment’. Journal of Geriatric Care and Research, 6(2), pp.56-63.
National Institute for Health and Care Excellence. (2018). Dementia: Assessment, management and support for people living with dementia and their carers, NG97. Retrieved from https://www.nice.org.uk/guidance/ng97/chapter/Person-centred-care
Parsons S, Winterbottom A, Cross P, Redding D (2010). The quality of patient engagement and involvement in primary care. London: The King’s Fund. Available at: https://www.kingsfund.org.uk/projects/gp-inquiry/patient-engagement-involvement
Rahman S., Dening, K.H., Dening. T. (2018). Frailty and dementia: promoting health assets and resilience. Nursing Times [online]. 113(9), pp.52-56. Retrieved from https://www.nursingtimes.net/download?ac=3043973
Rowley, J. (2018). Project report [PDF file]. Retrieved from https://www.trentdementia.org.uk/wp-content/uploads/2019/02/Life-with-Dementia-project-Summary-Project-Report-for-WEBSITE_-002-22.02.2019.pdf
Sturm, V. E., Yokoyama, J. S., Seeley, W. W., Kramer, J. H., Miller, B. L., & Rankin, K. P. (2013). Heightened emotional contagion in mild cognitive impairment and Alzheimer’s disease is associated with temporal lobe degeneration. Proceedings of the National Academy of Sciences, 110(24), 9944-9949.
The UK Network for Dementia Voices. (2019, March/April). Raising our voices to influence. Our deep news. Retrieved from https://www.dementiavoices.org.uk/wp-content/uploads/2019/03/9465a_DEEP-%E2%80%93-Newsletter-March-April-2019_AW.pdf
Trent Dementia Services Development Centre. (2018). Report of the Trustees and Unaudited Financial Statements for the Year Ended 31 March 2018. Retrieved from https://beta.charitycommission.gov.uk/charity-details/?subid=0®id=1109855
Trent Dementia Services Development Centre. (2019). Welcome. Retrieved from https://www.trentdementia.org.uk/