Research into practice - practice into research: outreach work with people with dementia at Tyne & Wear Archives and Museums

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Christiana Flynn
5 years ago
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1 Research into practice - practice into research: outreach work with people with dementia at Tyne & Wear Archives and Museums Zoë Brown Outreach Officer (TWAM) Bruce Davenport Associate Staff (ICCHS) & Freelance Educator/ Researcher

2 Background (1) Renaissance Transition Year & a strategy for Outreach. Why work with partner organisations? The need to demonstrate impact The partner organisations

Aims of the organisation we are working with Aim Impact Outcomes Outputs Independence and resilience Changes that we infer to / expect to happen Confidence Increased mental

3 Aims of the organisation we are working with Aim Impact Outcomes Outputs Independence and resilience Changes that we infer to / expect to happen Confidence Increased mental wellbeing Positive socialising and peer support Measure soft outcomes using ladder of change Workshop and activity programme we provide. measure the number of activities, participants etc

4 Background (2) Digital Storytelling workshops with people with dementia Observations of participants behaviour Increased recognition of their own voices and stories Increased recognition of other participants Created question What was happening during those sessions?

5 Literature Review Literature research for Outreach Team. To provide the Outreach Team with a better understanding of dementia; To make suggestions about how the symptoms of different forms of dementia might affect Outreach Team s working practices; To provide some insight into the intersection between the processes of digital storytelling and the different forms of dementia; To begin to formulate the value of this type of work in terms of a Social Return On Investment -type argument.

6 Literature Review Literature research for Outreach Team. To provide the Outreach Team with a better understanding of dementia; To make suggestions about how the symptoms of different forms of dementia might affect Outreach Team s working practices; To provide some insight into the intersection between the processes of digital storytelling and the different forms of dementia; To begin to formulate the value of this type of work in terms of a Social Return On Investment -type argument.

7 Towards an argument for value Need to measure impact in terms of outcomes. Need measures that will find acceptance amongst stakeholders and partners..?

8 Towards an argument for value Domain Cogni&on in the person with demen&a Pa&ent Mood Family Mood Pa&ent Quality of Life Family Carer QoL Family Carer Burden Pa&ent Ac&vi&es of Daily Living Pa&ent Behaviour Staff Carer Morale Global Pa&ent Measures Tool(s) Alzheimer s Disease Assessment Scale (ADAS- Cog), Nurses Observa>on Scale for Geriatric Pa>ents (NOSGER), Cambridge Cogni>ve Examina>on revised (CAMCOG- R) or the Mini- Mental State Examina>on (MMSE) Cornell Scale for Depression in Demen>a (CSDD) General Health Ques>onnaire (GHQ) Quality of Life in Alzheimer s Disease (QOL- AD) World Health Organisa>on Quality of Life Assessment Instrument (WHOQOL) Zarit Burden Interview (ZBI) Lawson- PMS- IADL Neuropsychiatric Inventory (NPI) Either GHQ or the Masach Burnout Inventory (MBI) the authors are ambivalent Either Clinicians Global Impressions of Change (CIBIC- Plus) or the GoRreis- Brane- Steen (GBC) measures again the authors are ambivalent and both of these require trained staff to implement.

9 Towards an argument for value Primary outcomes anticipated for reminiscence therapy: quality of life of the person with dementia; the care-giver s mental health. From the protocol for randomised trials of reminiscence therapy published by Woods et al. (2009). Secondary outcomes anticipated for reminiscence therapy: autobiographical memory in the person with dementia; quality of relationship between the person with dementia and their carer; depression and anxiety for both parties; stress in both parties; general quality of life for both; general functional ability.

10 Literature Review Literature research for Outreach Team. To provide the Outreach Team with a better understanding of dementia; To make suggestions about how the symptoms of different forms of dementia might affect Outreach Team s working practices; To provide some insight into the intersection between the processes of digital storytelling and the different forms of dementia; To begin to formulate the value of this type of work in terms of a Social Return On Investment -type argument.

11 Outreach work as therapy? The methods and approaches used by the Outreach Team overlaps with existing nonpharmacological therapeutic approaches. This is not an explanation but it points towards possible explanations and future questions.

12 Therapeutic Approaches Memory Stimulation structured techniques to support memory Artists for Alzheimer s programmes; using creativity Validation Therapy*; empathetic listening Drama & storytelling; elicits associative conversation and social interaction Reminiscence supports recall of autobiographical memory and repersonalisation

13 The issue of evidence The amount of evidence for these approaches is very small. This, partly, relates to the gold standard for evidence being derived from the protocols developed for testing drugs.

14 Literature Review Literature research for Outreach Team. To provide the Outreach Team with a better understanding of dementia; To make suggestions about how the symptoms of different forms of dementia might affect Outreach Team s working practices; To provide some insight into the intersection between the processes of digital storytelling and the different forms of dementia; To begin to formulate the value of this type of work in terms of a Social Return On Investment -type argument.

15 Thinking about practice Worked with Outreach Team to encourage them to reflect on their working practices. Built on: Information about symptoms of different forms of dementia Information about positive aspects of symptoms that can be built on The ideas of different therapeutic approaches.

16 Thinking about practice Dementia with Lewy Bodies Fluctuations in attention and alertness is the third of the three main symptoms. The person s level of alertness and confusion can markedly change from day to day, hour to hour and even minute to minute. The sessions/workshops will need to be engaging but short and adaptable to the varying nature of participant s mood, attention and alertness. Sessions should not be so reliant on a finished product. Workshop/sessions should feel exploratory but not imposing. A number of taster / introductory session should be undertaken.

17 Rationale for The Grid

18 Thinking about practice Based on input from Outreach Team, started to break-down workshop into parts and elements of activity. Aim is to produce first version of The Grid of activity and potential outcomes.

19 Thinking about practice Headline activity Element of activity Subjective experience of participant Possible outcome or impact Evidence / Source for statement

20 Headline activity Element of activity Experience of participant Possible outcome / impact Source Hosted in culturally valued space Participants experience being normal again Long-term group work reduces sense of isolation and increases connectedness Fleming & Gallagher, 1999, 24

21 Thinking about / advocating practice Once data is gathered Change the order of the grid Aim is to improve efficacy of work with partner organisations

22 Thinking about / advocating practice Client Expected outcome for client Activities Evidence and sources

23 Questions?

Dementia and Imagination Research Methods

Dementia and Imagination Research Methods Dr. Gill Windle, Dementia Services Development Centre Dr Carys Jones, Centre for Health Economics and Medicines Evaluation School of Healthcare Sciences Bangor