Engaging in meaningful activity is a key component of an active lifestyle, with the maintenance of function being critical to physical and mental well-being and even to life expectancy. A study by M Lee in 2009 identified that people who continue to try doing things for themselves, even if their dementia is quite advanced, tend to live longer than those who stop.
As the worldwide lifespan is lengthening and dementia is increasingly common, maintenance and support of activity has become the business of health and social care as well as informal carers, friends and family. After the age of 65 rates of dementia double every five years challenging both personal and public service provision (Larson, 2010). Clinicians and informal carers report challenges in maintaining activity and choice for older people with dementia (Barak & Aizenberg, 2010) and Government initiatives such as the Prime Minister’s Challenge on Dementia (2020) have endeavoured to tackle the problem of engaging people with dementia in activity.
As improved assessment is the cornerstone to improved management, the use of standardised assessment is imperative. QCS PAL Instrument for Occupational Profiling (Pool, 2012) addresses many of these issues particularly as it is a bespoke system for use with people with dementia and its main focus is on engagement in activity and therapeutic environments. The recent extension of its use to include an outcome measure, has enabled formal and informal carers to be able to identify whether the PAL programme of activity has been structured to maximise opportunities for increasing engagement in personal and meaningful activities.
PAL Engagement Measure has the potential to measure such changes which are known to be associated with with improved functioning in activities of daily living and reduction in carer burden (Graff et al, 2006).
Giving real-life ‘before and after’ descriptions is an interesting way for caregivers to describe the results of their activity with an individual; but a story in itself may not be sufficient to convince others of the potential for improvement, hard facts are sometimes needed. That is why it is helpful to keep records that show the progress of the person with cognitive impairment.
PAL Engagement Measure has been validated as sensitive to change and shown to illustrate changes in engagement that is aligned with changes in behaviour including relating to others, dexterity, and emotional interaction. This new development of the PAL Instrument battery of tools enables users to measure the outcome of specific activities in a reliable and structured way and also will alert the care giver to the need to readminister the also reliable and valid PAL Checklist (Wenborn J et al, 2008) when significant improvements or deterioration in abilities is being highlighted by the Engagement Measure.
If caregivers keep records and are actively seeking improvements in the experience of the person or people they care for, then they are maintaining an attitude of expectation, rather than one of acceptance that there is no scope for improvement. The negative culture of assuming an inevitable decline of the person with cognitive impairment, where the cause is viewed as progressive, such as in Alzheimer’s disease, is now held to be harmful itself – it may become a self-fulfilling prophecy. If caregivers and the person being cared for accept this assumption, the person’s psychological well-being is undermined, and this can adversely affect the person’s physical health and functional ability. An expectation that positive caregiving can have a healing effect, where the person may improve to a higher level of cognition and ability will change the whole culture of caring for this group of people.
Overview of QCS PAL Engagement Measure
The Measure enables four key domains of function to be assessed: cognitive abilities; physical abilities; social interaction and, emotional well-being. Each domain has a number of descriptions of how the individual engages in a specific activity, utilising skills and, in the case of emotional well-being, expressing positive mood through behaviour. There are twenty descriptors in total. The observer is invited to score each of the descriptors using zero for not observed during the activity; one for observed at times but not consistently and, two for observed consistently in keeping with the activity. In addition to the scoring system, which can be totalled and calculated as an overall percentage of engagement, the individual cells are colour coded with red for zero, yellow for one and green for two. This provides an ‘at-a-glance’ view of the individuals engagement in the activity during a specific event.
With further columns on the Engagement Measure, it is possible to assess for change over time in the same activity. The user selects the activity being measured and this can range from everyday activities of daily living to bespoke leisure activities. Any changes over time can alert the care giver to address new needs or abilities that have been highlighted, possibly by adapting the method of engagement; restructuring the activity environment or, referring to a specialist service such as occupational therapy or physiotherapy
Introduction to Hamberley Care Homes
With 15 care homes across the UK, Hamberley uses a personalised approach to care: supporting residents to live fulfilled and meaningful lives, with as little or as much support as they require. Each home has a Wellbeing and Lifestyle Coach and the team is led by the Therapy Development Manager. She was already a user of PAL Instrument and was finding it to be a useful tool for assessing and planning the enablement of meaningful activity for residents . She was excited to learn that PAL Engagement Measure was now developed and validated and was keen for the Wellbeing and Lifestyle Team to be able to meausre the outcome of their activities and show the evidence behind the activities that are being run in the Hamberley care homes.
The team attended online teaching sessions with the Therapy Development Manager as part of their regular weekly meetings prior to commencing the trial. This forum was used to discuss the deliverly of meaningful activity by staff, how activities are adapted and staff support to enable individual residents to engage at their own level of ability. These meetings also gave the group the opportuntiy to discuss the benefits of recording someones engagement in an activity as well as providing specific traing in using the tool. In February this year, the team began to pilot use of PAL Engagement Measure in 6 homes and feedback from the Wellbeing and Lifestyle Coaches (WBLC) was provided four months later:
1. Ease of use
“I think it is good to use – Sometimes it was a little time consuming, but I think the benefit of it outweighs that.”
“I did find it quite easy to use and much more user friendly, I must say, than I expected.”
“I really liked it, found it easy to use and record after the activity.”
“found the form straight forward and self-explanatory and easy to use”
“It was easy to use, I liked it, it is understandable.”
2. Likelihood to continue to use
“I think it is good to use for activities that happen regularly as you will be able to compare between when they started and see if they are improving”
“I think this would be good to roll out, with a full understanding in how and when to use.”
“It is functional and I understand the importance of collecting data on function and performance, however I am struggling to find the time to fill it out. I don’t always do the same activity each week, so this maybe a problem.”
3. Method of use
“Used with F as she regularly comes to the activities, I completed it at the end of the day”
“Use it for weekly reading club and it was interesting to see change in the 4 weeks”
“I am starting to complete the PAL assessments and think this will be good to use alongside these”
“I think it is really good that we are looking at ways to measure the difference we make when working with residents, it shows that activities such as Oomph exercise session makes a difference.”
4. Impact on team members
“It was lovely for the staff to see a resident who engaged in chair exercises who has never engaged before, and they were so amazed! If this is introduced to the staff, then I think it will work”
“I think this would be really good for feeding back to the team and family on how well a resident it is doing”
5. Impact on service to residents
“If we are not doing the engagement form for all the residents taking part, it may steer away from residents that are not involved in the form as more focus may be drawn to the residents involved. Only slight negative impact however, I believe that it is more of a positive impact.”
6. Impact on the business
“I email the relatives to let them know that their relative joined in etc and they really appreciate the email, which is a positive thing for the business.”
The Therapy Development Manager now plans for PAL Engagement Measure to be used in all Hamberley Care Homes and new developments. Using the tool brings into focus the importance of meaningful activities and how to support individuals to maximise the impact of activities. Providing the ‘right’ kind of activity, support, monitoring and adapting this over time is a skilled intervention which is often not recognised in care homes. Using PAL Engagement Measure will give the care homes the ability to feedback changes to residents’ families and allow staff to reflect on the impact of the current activity being used and make adaptations. Hamberley Care Homes also view the use of PAL Engagement Measure as a valuable tool to obtain evidence of person centred engagement and usefulness of new product when trialling new activity resources or technology within the group.
PAL Engagement Measures were completed on a range of activities from reading groups to exercise. The most meaningful information is at the individual level when change or maintenance of abilities over time in a specific activity can be identified in order to plan and adapt the activity so that the best possible engagement is achieved.
However, it is interesting to note that in this small pilot project all of the 7 residents involved improved in their overall function and emotional status (figure 1).
It can also be easily seen from this graphic illustration that client D, who engaged in the same group activity as A,B,C and E, was less engaged and immediately supports a discussion about either the suitability of inclusion in that activity, or with the other more able residents as well as how to adapt the activity so that they can more easily engage in it
Figure 1
Conclusion
This article provides an example of how QCS PAL Engagement Measure can be used to record the way that an individual has engaged in a specific activity over a time period. This can be used to identify aspects to focus on in order to support the individual to improve or maintain their functional ability.
The measure can also be used as part of a reflective practice supervision of care or activity team members as it identifies how the individual has been supported to engage in a specific activity and can illustrate how the team member has improved their support.
PAL Engagement Measure can also be used as an outcome measure for evidencing the usefulness of a new activity resource that might be being trialled in a care setting. And it can provide reassuring information to family and close others about the lifestyle and wellbeing of their loved one
References
Barak, Y & Aizenberg, D. (2010) Is dementia preventable? Focus on Alzheimer’s disease. Expert Review of Neurotherapeutics.10(11), 1689-1698.
Department of Health (2020) The Prime Minister’s Challenge on Dementia. London
Graff, M. Vernooij-Dassen, M. Thijssen, M. Dekker, J. Hoefnagels, W. Olde Rikkert, M. (2006) Community Occupational Therapy for Older Patients with dementia and their care givers: randomised controlled trial. BMJ 333:1196-1202.
Larson, EB. (2010) Prospects for delaying the rising tide of worldwide, late-life dementias. International Psychogeriatrics. 22(8), 1196-1202.
Lee M (2009) Dementia and Life Expectancy: What Do We Know? Journal of American Medical Directors Association Volume 10, Issue 7, Pages 466-471
Pool, J. (2012) The Pool Activity Level (PAL) Instrument for Occupational Profiling: A Practical Resource for Carers of People with Cognitive Impairment. 4th Ed.
University of Bradford Dementia Good Practice Guides
Wenborn, J. Challis, D. Pool, J. Burgess, J. Elliott, N. Orrell, M. (2008) Assessing the validity and reliability of the Pool Activity Level (PAL) Checklist for use with older people with dementia. Aging and Mental Health . 12(“), 202-211.
For more information about QCS PAL Engagement Measure and other resources in QCS Dementia Centre, visit: https://www.qcs.co.uk/dementia-centre/
For more information about Hamberley Care Homes, visit: https://www.hamberleycarehomes.co.uk/