Nurses perceptions of “usual care” of people with Dementia in long-stay care settings: the DARES study

•Stephanie Payne

•Nicola Hyde

•Dympna Casey

•Kathy Murphy

•Adeline Cooney

2

This presentation will focus on

Telling you what the DARES study is to give a context

Describing the findings from research that we did to define usual care

What DARES Stands For

• The DementiA Education Programme Incorporating RemeniscencE for Staff Programme

4

WHAT IS DARES

• Dares was a two-armed, single blind cluster randomised trial evaluating the effectiveness of reminiscence for people with dementia in long stay care settings in Ireland

• There was an embedded qualitative component, and interviews with control sites

5

Sample Size18 long-stay units 17 residents with dementia per unit10 staff per unit Total 379 residents screened, 304 included

Where are we now:Protocol publishedStudy completeLaunch of overall findings in coming monthsMain finding paper in review

WHAT IS DARES CONT.

Background

• Dementia- characterised by memory loss and other cognitive disturbances that lead to complete dependency (Rodney 2000)

• Currently 38,000 people with dementia in Ireland, 40% of these are in residential care

• By 2036, prevelance of dementia in Ireland will increase from to 100,000 (O’Shea 2007)

• Approximately a half of these will live in long term care settings (Herbert et al 2001)

7

Background

• Residential care staff sometimes find caring for people with dementia challenging

• Calls from nurses for increased training & education• Increasing recognition that psychosocial interventions may be

important• Reminiscence now accepted as a therapeutic approach to

working with people with dementia but evidence evaluating effectiveness limited

8

Where we did our work

• Sites across the western seaboard and midlands

9

Public units Private units (n=11, 37% of beds) (n = 34, 63% of beds)

NOW FOCUSING ON DARES CONTROL INTERVIEWS

• The aim of the rest of this presentation is to illuminate and systematically describe “usual care” for persons with dementia living in long stay residential settings in Ireland

Research Method

• Qualitative Descriptive design was used• Sample = 9 • Inclusion criteria

–Registered nurse in a management role–Working in a control site

Participant demographics

Characteristics of Participants Number of participants n=9

Female 9Aged 41-65 6Nationality Irish 5Non Irish Nationality 4Registered General Nurse 8Registered Psychiatric Nurse 1Worked in Care of Older people for 1-10 years 5Postgraduate diploma in Gerontology 2Completed dementia specific training 5Training in psychosocial interventions 4

Data Analysis

• All interviews recorded and transcribed• Transcribed interviews were coded using

Nvivo 9.1• Thematic analysis was used to analyse the data• Coding framework developed from open

coding of transcripts, themes and sub-themes identified, re-analysed using framework

Findings

Themes 5 main themes

Being diagnosed

Impact of the physical environment

Challenging behaviours

We need education

Activities

Diagnosis

• Many residents are never officially diagnosed with dementia

– “People having problem with their memory, things like that but they are not diagnosed as having dementia and they're not diagnosed as having depression”. [S4]

If a diagnosis is made

• Residents in the care setting usually diagnosed by GP then refers to gerontologist or psychiatric services

• But waiting times could be an issue:• “Yes, it takes a long time, waiting for, waiting for maybe minimum

of 8 weeks for a psychiatrist to call in to see the resident”. [S16]

Impact of physical structure on care

• Over half of the participants reported that there were some design aspects used to orientate dementia patients- but that this was better within dementia specific units

• “...the same floor covering is running through, so at least they don't feel they're stepping up or you know, do you know the way they think they're stepping up onto a step and they're lifting their leg and they're actually on the flat, that kind of thing, but in the dementia-specific unit you know they introduce different artwork on the walls there, you know, of say places and times gone by...” [S17]

Important of physical environment to safe care

• Participants identified the importance of safety features- coded doors, alarm systems, hand rails

• “...well, for us[staff], our doors here are coded...” [S12]

• “...they[residents] wear an identity bracelet that would prevent them[residents] from leaving the door unsupervised...” [S17]

• “Yeah, all the corridors are safe. All the corridors have hand, like wide hand-rails...” [S13]

• All participants whose settings had a dementia specific unit felt these enhanced patient safety

• Some participants felt dementia specific units could implement different strategies, e.g. having the same floor covering, having safer places to wander, slower pace, more appropriate activities, an increase in staff: patient ratio.

It could be better

Challenging behaviours

• All participants reported difficulties in managing challenging behaviours, some staff lacked strategies to manage these behaviours and were concerned about how resident accusations may be perceived:

• “...She[resident] is finding out what the staff are doing and she[resident] is accusing the staff for doing so-and-so. Like, if someone collapses, she [resident]is telling that the staff pushed her[resident] down. So this is a big issue...” [S16]

Behaviours that Challange

• Participants described types of behaviours that challenge that they had experienced including :

verbal abuse, physical aggression, agitation, wandering

One participant described how when the resident was agitated it was difficult to mange because the resident would not listen

“she’s kind of agitated really for something and she wont listen...”

Participants described how they currently manage behaviours that challenge

• Strategies used to deal with challenging behaviours included giving the resident time to calm down, distraction techniques, calling in relatives, medication, allocating them staff they liked and using music

you know calm, melodious, harmonious base music and that has a calming effect on the agitated resident” [S8]

Strategies Continued

• One participant described how she used diversion

• “...It’s really a case of diverting her[resident] to somewhere else and getting her[resident] mind off it” [S17]

Education

• Most participants had completed a dementia specific education programme, one participant described how all staff in the unit had access to education:

• “...Everybody from the porter, kitchen staff, care assistants, staff nurses: everybody.... Everybody because everybody here is involved in the care of the dementia patient. You know because everybody has to interact with them, even the porter” [S19]

• Content included psychosocial interventions, managing challenging behaviours and crisis prevention interventions

Activities in the Unit

• All participants described at lease one activity done on a regular basis in the unit. Half of the units had an activities person of a member of staff allocated to this:

• “...there is one of the senior healthcare assistant every day working in the nursing home and she is the one who coordinates activities for the residents...” [S4]

Participants described the range of activities

• These ranged from spiritual to creative activities such as pottery and painting:

• “… we have a pottery man coming and a musician here and a person who do the painting”. [S4]

• Over a half reported using reminiscence regularly

Conclusions

• It is best practice for a diagnosis of dementia to be made only after rigorous medical examination, and should be reviewed on a regular basis (NICE, 2006), but diagnosis was a real issue

• Environments need to be dementia friendly, signs, colours, cues

Conclusions

• Staff working in residential care need good education, in particular strategies to manage behaviours that challenge

• Great diversity in activity provision, all older people need meaningful activity

References

• Hebert, R., Dubois, M.F., Wolfson, C., Chambers, L. And Cohen, C. (2001) “Factors associated with long-term institutionalization of older people with dementia: data from the Canadian Study of Health and Aging”, The Journals of Gerontology, Series A: Biological Science, Medical Science, 56, 693-699

• Rodney, V. (2000) “Nurse stress associated with aggression in people with dementia: its relationship to hardiness, cognitive appraisal and coping”, Journal of Advanced Nursing, 3, 172-180

• O’Shea, E. (2007) Implementing policy for dementia in Ireland: the time for action is now, NUI Galway Irish Centre for Social Gerontology