The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia

Figures & data

Figure 1 Overview of development phases of PRIDE intervention and manual drafting within the MRC framework.

Abbreviations: PPI, Public Patient Involvement; ELSA, English Longitudinal Study of Ageing; PRIDE, Promoting Independence in Dementia; MRC, Medical Research Council.

Box 1 Case stories based and examples drawn from qualitative interviews and results of epidemiological findings

Samuel and Rose Samuel has dementia. His wife, Rose, takes care of a lot of things around the house. He describes how he feels about making decisions: “Quite happy to go along. My wife is a very good judge of character and I won’t interfere with that at all. If she says we’re going to have chops for dinner, I won’t argue because she’s such a good cook and there’s no point in talking about it any more.” – Samuel Samuel is happy for others to make decisions for him Decisions may be discussed, but when asked, Samuel often says to Rose; “That’s up to you. You do what you think” Samuel may be finding it difficult to make certain decisions

Gloria Gloria has always been a very independent lady and has lived on her own for a long time. She is reluctant to accept any support as she feels this will compromise her independence. “My independence is really important to me, and I know if someone came in and started telling me how I should run things or do things, I think I would certainly retaliate and not conform to anything they would want to do.” – Gloria Gloria has always made her own decisions. Gloria does not like other people interfering. Gloria doesn’t like asking for help. Others around Gloria may have tried to help, but Gloria has declined this.

Hal’s Story: I have trouble with my hearing and my sight “Hearing can be a worry. In a noisy place I will miss a lot of information or conversation that’s going on.” – Hal If you’re concerned about your hearing or vision, book an appointment to have your hearing and sight tested. High street opticians often offer both services. If you already have hearing aids it might be worth checking you have the correct batteries, or that your hearing aid isn’t broken. If you already have glasses, perhaps your prescription may need to be updated as sight can change. In group situations ask people to speak more loudly, clearly, or repeat what they are saying if you didn’t catch it the first time.

Ben and Sade Privacy – Some people prefer to keep information about their lives and health conditions private “We haven’t told the neighbours – there’s no need to. We hardly meet the neighbours, really. They’re not the sort of neighbours like we’re used to.” – Ben and Sade Worry or fear – Some people are worried about how others will react if they know about their diagnosis. They may feel like this about everyone, or just certain people.

Table 1 Content of PRIDE manual, source from which information was derived/adapted and theoretical models and frameworks

PRIDE topics/process	Description of topic	References/evidence	Theory/mechanisms
Finding a balance	Helping the person to think about time and resources available/needed in order to get the most out of activities. How to adapt activities that have become or may become challenging Rest and relaxation Routines and reminders	Qualitative interviews	Self-management: selecting and making use of resources Self-efficacy theory^Citation35, ^Citation40 Selective Optimization with Compensation (SOC) model^Citation32
People and connections	Information and activities about how people can provide support to the person with dementia Thinking about how the person’s support network can be enhanced, and who might be around to support the person to do specific things Finding a balance in the amount of support that is provided to the person	The Practitioner Assessment of Network Type (PANT)^Citation47 Circles of Support model ^Citation48	Social network theory^Citation33 Self-management: selecting and making use of social resources
Keeping going	Introduction to the plan, do, review process including examples of completed worksheets Finding motivation to do activities and “keep going” Getting around as a practical consideration in planning and doing activities out in the community		Self-management: problem-solving strategies
Keeping mentally active	Information about mentally stimulating activities Examples of carrying on, doing more, and trying new mentally stimulating activities	Epidemiological data^Citation13 Cognitive Stimulation Therapy (CST) research and evidence, qualitative interviews	Use it or lose it
Keeping physically active	Information about physical activities Examples of carrying on, doing more, and trying new physical activities	Epidemiological data^Citation13 Qualitative interviews
Keeping socially active	Information about socially stimulating activities Examples of carrying on, doing more, and trying new socially stimulating activities	Epidemiological data,^Citation13 research literature, qualitative interviews	Social network theory^Citation33
Making decisions	Information and activities to help the person with everyday decision-making Case stories and quotes to help the person reflect on their own situation Examples of challenges people experience when making decisions and problem-solving tips Examples of how people have effectively overcome challenges with decision-making	Qualitative interviews	Self-efficacy theory^Citation35,Citation40 Self-management: decision-making
Getting your message across	Information and activities to help the person communicate with those around them Supportive relationships Case stories and quotes to help the person reflect on their own situation Examples of challenges in communication	Qualitative interviews	Social network theory^Citation33
What does it mean to be told you have dementia?	Information about receiving a diagnosis of dementia, managing worries, and sharing a diagnosis with others Case stories and quotes to help people reflect on their own situation	Qualitative interviews	Developing a positive narrative of life with dementia Social network theory^Citation33
Keeping healthy	Links to websites and resources about keeping physically healthy including general health, heart health, diabetes, lifestyle (eg, nutrition, weight management, sleep, worries), dental health, and smoking and drinking alcohol.	Web-based resources and fact sheets from organizations such as the Alzheimer’s Society, and National Health Service (NHS) Choices, University of Waterloo Living Well resources	Self-management: making informed choices about care and health
Plan, do, review process			Self-management: Plan: problem-solving, decision-making, selecting and making use of resources, making informed decisions about health and care Do: making steps to implement behavior change Review: problem-solving

Figure 2 PRIDE intervention structure.

Box 2 Changes made in response to consultations

Examples of changes made: structure

In the first iteration, an overview of the programme and sessions in the form of a game board was included. Although participants said it was important to provide this information so that people would know what to expect throughout the intervention, they felt the design was “too busy” thus this was redesigned in the second draft. “The diagram is very nice and clear, but might be too much for people with dementia.” (Carer, memory café consultation) “Daunting, dementia adviser would be okay with it, better to break it down into sessions eg, page for start, page for session 2 etc.” (Dementia adviser, consultation group) A modular approach was considered with separate booklets for each topic, but ultimately rejected. “Easy and less daunting if it were split into booklets based on needs.” (Dementia adviser, consultation group) The initial version of the social connections mapping exercise had many different blank sections for the person to add detail. Some participants felt it could be disheartening for people “to realise how few people they have in their lives” if they were not able to fill in all of the “social map”; therefore the design was made simpler, with fewer boxes to fill in. “Support network: It is much too much. I was crying when I read this page. New friend? No, how to get new friends when you are old and living with dementia.” (Person with dementia, interview consultation) “If someone had hardly anyone in their support network, the section on this might be upsetting – to realise how few people they have in their lives.” (Carer, interview consultation)

Examples of changes made: content

A number of participants said the manual was too long and that this may be overwhelming for those using it in the sessions. “Not very user friendly as it has too much information. This will put them off straight away.” (Carer, memory café consultation) “Even if the manual is smaller (in length) it won’t get people to pick it up. They’ll put it down and won’t remember where it is.” (Dementia adviser, consultation group) Vignettes were initially labelled as “case stories”. However, this was not well received. “Case story sounds childish – case study is a term most people are familiar with.” (Person with dementia, email consultation)  “Sounds like ‘case history’ – medical/professional sounding. ‘Personal story’ or ‘your story’. ‘Jill’s story’” (Dementia adviser, consultation group)   The title of each vignette was changed as suggested so that it included the name of the character featuring in the scenario. For example, “Inge’s Story”. Some participants were concerned that the planning aspect of the intervention would not be suitable as it required cognitive skills, which tend to decline with dementia. “A lot of strategies for improvement are based around giving a person ‘homework’- to sit down and write things down, listing things and even searching online all the tasks requiring a lot of initiative, planning and organizational skills which are often affected most. (Dementia adviser, email consultation)” Furthermore, they pointed out that activities may not be suitable for people depending on their educational and work life background. “Planning and organizational skills and writing things down might be quite developed for the people of certain educational background but not for the people who worked in more manual jobs or have been retired for a long time and main hobbies were more practical – gardening, cooking, housework, sports etc.” (Dementia adviser, email consultation)

Examples of changes made: miscellaneous

Several participants felt that stipulating a supporter is required for the intervention would exclude those who might stand to benefit but who could not identify someone to participate alongside them. “It’s a shame you’re excluding people who don’t have a carer or friend who can attend with them. I’d be excluded as I don’t have a carer and all my friends are at work.” (Person with dementia, email consultation)

Table 2 Behavior change techniques embedded in PRIDE for assessment of fidelity

Aspect of PRIDE manual		Behavior change techniques coded using BCTTV1 ^Citation53
Necessary information	Introduction	N/A
	Finding a balance	1.1 Goal-setting behavior 3.1 Social support unspecified 3.2 Practical social support 4.1 Instruction on how to perform the behavior 7.1 Prompts/cues 8.1 Behavioral practice/rehearsal 8.3 Habit formation
	People and connections	1.2 Problem-solving 3.1 Social support unspecified 4.1 Instruction on how to perform the behavior 5.3 Information about social and environmental consequences 6.1 Instruction on how to perform the behavior
	Keeping going	3.1 Social support unspecified 4.1 Instruction on how to perform the behavior
Tailored topics	Tailored topic 1 (Keeping mentally active)	1.2 Problem-solving 5.3 Information about social and environmental consequences 8.7 Graded tasks
	Tailored topic 2 (Keeping physically active)	1.1 Goal-setting behavior 1.2 Problem-solving 3.1 Social support unspecified 4.1 Instruction on how to perform the behavior 5.1 Information about health consequences 5.3 Information about social and environmental consequences 5.6 Information about emotional consequences 8.1 Behavioral practice/rehearsal 8.3 Habit formation 8.7 Graded tasks 9.1 Credible source 12.1 Restructuring the physical environment
	Tailored topic 3 (Keeping socially active)	1.2 Problem-solving 3.1 Social support unspecified 3.2 Social support practical 5.1 Information about health consequences 7.1 Prompts/cues
	Tailored topic 4 (Making decisions)	1.2 Problem-solving 3.1 Social support unspecified 3.2 Social support practical 5.3 Information about social and environmental consequences 6.1 Demonstration of behavior 9.1 Pros and cons
	Tailored topic 5 (Getting your message across)	1.2 Problem-solving 4.1 Instruction on how to perform a behavior 5.6 Information about emotional consequences 9.1 Credible source
	Tailored topic 6 (Receiving a diagnosis of dementia)	1.2 Problem-solving 3.1 Social support unspecified 4.1 Instruction on how to perform a behavior 5.3 Information about social and environmental consequences 5.6 Information about emotional consequences 6.1 Demonstration of behavior 9.1 Credible source
	Tailored topic 7 (Keeping healthy)	4.1 Instruction on how to perform a behavior 5.1 Information about health consequences 9.1 Credible source
Plan, do, and review	“Plan”	1.1 Goal-setting behavior 1.2 Problem solving 1.4 Action planning
	“Do”	2.3 Self-monitoring of behavior
	“Review”	1.2 Problem-solving 1.5 Review behavioral goal
Feedback and support	Feedback and support	2.2 Feedback on behavior 3.1 Social support unspecified 10.4 Social reward

Notes: Information provided in this table is from the PRIDE intervention framework which was used to develop PRIDE fidelity checklists (Walton, 2018).⁵⁴

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