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How to support and enable people living with all levels of dementia
In this article, the first in a series of four, I want to focus on how carers and activity providers can deliver a sense of emotional well-being to individuals living with dementia and all other forms of cognitive impairment. By assessing the individual’s overall level of cognitive and functional capability using the QCS PAL instrument, it is possible to then design care and activity plans that champion the person’s unique abilities while supporting them with their difficulties.
I want to start by looking at the Reflex level of ability, the most advanced state of dementia and show how it is possible to create an environment so the person can achieve their optimum level.
In any care setting it is important to focus on abilities, what individuals can do, and not only what their challenges are. I developed the PAL Instrument using a strengths-based approach to help carers understand the level of ability of each individual they are supporting – and how to deliver personal and leisure activities that are beneficial to that individual.
Before we look at how the nature of these activities change according to the different levels, I’d first like to explain how the QCS PAL instrument works. It is essentially a checklist with a series of questions, that assesses the level of functional and cognitive ability of the individual at four different levels: Planned, Exploratory, Sensory and Reflex.
‘Planned’ means that a person can carry out a task by themselves, although they may need help with activities requiring high-level thinking, such as problem solving. At the ‘Exploratory’ level, they need guidance, broken down into multiple stages. A ‘Sensory’ level requires the carer to demonstrate each step at a time, while at a ‘Reflex’ level, the person needs extensive support from their carer.
Each level has a guide for carers on how to support the person in personal, domestic and leisure activities (bathing/washing, getting dressed, dining, leisure activities etc.) as well as therapeutic activities to promote well-being.
A good example of an effective therapeutic activity is HUG. Launched in October after several years of research led by Cardiff Metropolitan University, it is a soft, comforting device designed to be cuddled. It has a beating heart within its soft body and can play favourite music from a hidden MP3 player.
HUG helps the individual to find comfort on their own, or with the support of another person. For example, it may take them back to when they were parents - bringing back memories when they drew comfort from cuddling their young children. It also provides an effective vehicle for a carer to connect better with a person, and to ensure a rewarding experience for both.
It has been trialled across the health and social care spectrum, including care homes, where it has been shown to consistently provide comfort and reduce anxiety. The QCS PAL instrument has been used to validate HUG. A landmark study revealed that 87% of those with dementia who used the HUG device over a six-month period saw an improvement in their emotional well-being.
The QCS PAL HUG Guides were specifically designed to explain how to use it. The aim is to ensure individuals are supported at ‘just the right’ level and are enabled to engage with the resource in the most meaningful way possible.
It’s useful to review how HUG can be used at the Reflex stage, to show how carers can adjust their approach to suit the individual.
With the more advanced symptoms of dementia, the person at the Reflex level of ability responds best to single sensations and reacts emotionally to therapeutic connection. To help the person relate to HUG, or any other object that is meaningful to the person, the carer should limit spoken directions to movements such as ‘lift’ or ‘hold’. To deliver this support in a person-centred way, they should also use a warm and reassuring tone and demonstrate how to hold or stroke HUG by guiding the individual’s hands around the device.
In terms of everyday activities, the carer can focus on what the individual still can do at this level of ability, which is responding in a reflex way. Examples include stroking the side of the face to elicit a rooting reflex when dining, or gently rubbing the palm of the hand to stimulate a grasp reflex to hold an object. By stimulating reflex responses, the carer promotes a sense of self and an opportunity for therapeutic connection.
The response to this type of connection will be highly nuanced – a slight smile or a raised eyebrow – and these should be viewed as a valued outcome by the carer. At this Reflex level, activities can only be sustained for short bursts of a maximum of ten minutes and should be evenly spaced throughout the day.
Many carers and family members have reported that an individual in the advanced reflex stage of cognitive impairment becomes more serene and, in some circumstances is able to ‘come back’ from a more remote place when using HUG. They have recorded a marked improvement in their sense of emotional well-being.
It is a great example of how the QCS PAL Instrument can be applied across a range of activities and how it helps deliver care that is rewarding for the individual as well as the carer. The free QCS PAL Instrument provides a changeable PDF version of the PAL Guides so carers and activity providers can include personal preferences and likes and dislikes of the individual and share it with colleagues and family members.
To find out more about the QCS Dementia Centre or to purchase a subscription, please visit https://www.qcs.co.uk/dementia-centre/or contact QCS’s team of advisors on 0333-405-3333 or email: firstname.lastname@example.org.
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