‘I already forgot half of it’ – Interviewing people with dementia for co-designing an intelligent system

Figures & data

Table 1. Information about participants.

Interview ID	Person with dementia (gender, age, diagnosis)	Caregiver (gender, relation to PwD)
# 1	Male, 89 years of age Alzheimer’s disease	Female (spouse)
# 2	1. Male, 86 years of age Lewy Body dementia 2. Female, 84 years of age (spouse) Unknown	Female (daughter)
# 3	Female, 93 years of age Unknown	Female (formal carer)
# 4	Male, 78 years of age Alzheimer’s disease	Female (spouse)
# 5	Female, 87 years of age Vascular dementia	Male (son)
# 6	Male, 84 years of age Alzheimer’s disease	Female (spouse)
# 7	Female, 72 years of age Gradual onset cognitive changes due to brain tumor treatment	Male (spouse)
# 8	Male, 74 years of age Unknown	Female (spouse)
# 9	Male, 82 years of age Unknown	Female (formal carer)
# 10	Male, age not given Lewy Body dementia	Female (spouse)

Figure 1. Overview of the three different analyses.

Table 2. Overview of contribution to the interview and in answering the questions including time in minutes and word count in percentages.

INTERVIEW_ID	# 1	# 2		# 3	# 4	# 5	# 6	# 7	# 8	# 9	# 10
Duration (minutes)	75	102		42	94	88	112	89	110	73	100
Word count PwD (%)	33,4	51,5	9,2^1	17,5	10,7	25,5	40,6	20,9	15,03	60,3	21,2
Type of carer	Spouse	Daughter		Formal carer	Spouse	Son	Spouse	Spouse	Spouse	Formal carer	Spouse
Word count carer (%)	25,6	17,0		23,5	66,2	51,3	40,9	56,9	68,4	8,0	51,8
Word count interviewer 1%)	29,0	13,0		52,9	18,4	19,8	10,5	14,9	13,0	27,6	22,1
Word count interviewer 2%)	12,1	9,3		6,1	4,7	3,4	-	3,5	3,6	4,2	4,9
Word count extra interviewer (%)	-	-		-	-	-	8,1	3,8	-	-	-

¹In this interview two persons with dementia were involved.

Table 3. Quantitative overview of information exchange – seven categories of questions and answers¹.

	Total	Answered by PwD (%)	Not answered by PwD (%)	PwD asks for help (%)	PwD does not know (%)
1. Length of question	2506	51,5	43,3	2,8	2,3
One word	316	41,1	57,9	0,6	0,3
Short question (2–5 words)	581	49,1	46,3	3,4	1,2
Long question (5+ words)	1609	54,4	39,4	3,0	3,1
2. Addressee*	2189	53,0	41,2	3,2	2,6
PwD-directed	1291	77,5	14,6	4,1	3,8
Undirected	541	28,3	67,3	3,0	1,5
Caregiver/Interviewer directed	357	2,0	98,0	0,0	0,0
3. Answer categories**	1832	63,0	30,1	3,8	3,1
Open question	373	53,9	31,1	7,0	8,0
Closed question (Yes/No)	1388	65,0	30,3	3,0	1,7
Closed question (Multiple options)	71	71,8	22,5	1,4	4,2
4. Sequence	1832
New question	200	48,5	37,0	6,0	8,5
Confirming question	453	64,7	33,3	1,1	0,9
Follow-up question	1056	65,3	27,3	4,5	2,9
Rephrasing question	93	64,5	26,9	4,3	4,3
Other sequence question	30	46,7	46,7	3,3	3,3
5. Nature of question	1832
Recall question	937	59,3	35,0	3,2	2,5
Hypothetical question	93	53,8	33,3	5,4	7,5
Reflective question	626	70,6	20,4	5,0	4,0
Rhetorical question	122	65,6	32,8	0,8	0,8
Other nature question	54	48,1	46,3	3,7	1,9
6. Content	1832
Negative wording	192	60,9	26,6	6,8	5,7
Neutral wording	1261	61,1	32,6	3,3	3,0
Postive wording	379	70,2	23,7	4,0	2,1
7. Who asked question	1832
Interviewer	1623	62,2	31,1	3,7	3,0
(in)formal carer	209	69,4	11,5	4,3	3,8

¹Total numbers per question type are given. The percentages relate to the type of question (e.g., 41,1% of the one-word questions were answered by the PwD). The highest percentages per column are outlined per category of questions. *One-word questions were not further coded. **Caregiver/Interviewer directed questions were not further coded.

Figure 2. Information exchange – Different answer categories and length of answers.

Figure 3. Information exchange – Different sequence of questions and length of answers.

Figure 4. Information exchange – Different nature of questions and questions and length of answers.

Table 4. Information exchange – nature of questions and nature of answers¹.

	Answered by PwD (63,0%)
	Recall answer (%)	Hypothetical answer (%)	Reflective answer (%)	Rhetorical answer(%)	Other nature of answer (%)	Not answered or other response (37,0%)
	32,1	2,7%	24,2%	2,0%	2,0%
Nature of question
Recall Question	50,4	0,5	5,5	1,3	1,6	40,7
Hypothetical Question	8,6	30,1	9,7	2,2	3,2	46,3
Reflective Question	10,7	1,8	55,4	1,1	1,6	29,4
Rhetorical Question	23,8	4,1	24,6	10,7	2,5	34,4
Other nature of Question	22,2	1,9	9,3	3,7	11,1	51,8

¹We highlighted the cells that show potential linked nature of questions and answers. Eg 50,4% of the recall questions received a recall answer.

Table 5. Percentages of the actions per interview¹.

INTERVIEW_ID	# 1	# 2	# 3	# 4	# 5	# 6	# 7	# 8	# 9	# 10	Total
Story interviewer	7,3	7,0	4,5	5,5	2,9	2,2	4,3	5,7	7,5	8,2	5,2
Help interviewer	1,2							0,9		1,4	0,3
Structure terms/Preludes*	3,3	2,6	2,7	5,9	1,9	1,9	4,3	4,3	3,1	8,7	3,6
Introducing attributes*	3,7	3,7	3,6	1,8	1,9	0,8	1,8	2,6	1,8	3,4	2,3
Jokes	7,8	8,9	8,1	9,1	22,7	5,8	9,7	5,2	9,3	6,8	10,0
Laughing	43,3	41,5	60,4	37,0	42,2	65,1	60,9	50,9	48,5	45,9	49,6
Stay silent*	0,4	0,4		5,9	4,8		2,9	0,9	0,4	0,5	1,8
Empathy & understanding	5,7	4,1	1,8	11,9	5,3	4,4	3,6	8,7	1,8	11,1	5,8
Positive statements	21,6	24,4	12,6	17,8	10,7	15,4	8,6	17,4	22,0	11,1	16,0
Complimenting	5,3	6,7	2,7	5,0	5,3	2,7	3,9	3,5	5,7	2,4	4,4
Difficult wording*	0,4	0,7	3,6		2,1	1,6				0,5	0,9
Total	100%	100%	100%	100%	100%	100%	100%	100%	100%	100%	100%

¹To able to compare the interviews, it was decided to present percentages of the actions. E.g. of all the actions coded in interview 1 7,3% was a “Story interviewer”- code. Compared to the total average percentage of “Story interviewer”-code (5,2%), it can be assumed that there were somewhat more stories shared in interview 1 than on average. In this Table the actions are accompanied with * were expected to relate to information exchange. Other actions were expected to relate to atmosphere.

Figure 5. Percentages of positive, negative, and neutral responses of the person with dementia per interview.

Figure 6. Action types, question types and related responses.

Table

2.1 Length – 1 option possible
#	By	What	Example	Code-label
2.1.1 XX	Interviewer or (in)formal carer	Asks a question with 1 word or “lidwoord en zelfstandig naamwoord”. Not include Uh and Oh.	Yes? The car?	One-word-question
2.1.2	Interviewer or (in)formal carer	Asks a question with 2 to 5 words. Only counting the words in the actual question (not explaining sentences before). Uh and oh include in wordcount.	And what about you, sir?	Short question
2.1.3	Interviewer or (in)formal carer	Asks a question with more than 5 words or multiple questions after each other. Uh and oh include in wordcount.	Can you explain why being of value to others is important to you? Is it something that you search for in your life on a daily basis?	Long question

Table

2.2 Addressee – 1 option possible
#	By	What	Example	Code-label
2.2.1	Interviewer or (in)formal carer	Directly addresses or shifts conversation to person with dementia	What about you, sir?	PwD-directed questions
2.2.2 XX	Interviewer	Directly addresses or shifts conversation to carer or interviewer (if carer is asking)	What about you, madam?	Interviewer/Carer-directed questions
2.2.3	Interviewer	Ask question to both interviewees or to no-one in particular	Could you (=jullie) introduce yourself? Having dinner is important?	Undirected questions

Table

2.3 Answer categories – 1 option possible
#	By	What	Example	Code-label
2.3.1	Interviewer or (in)formal carer	Asks a question that can be answered with‘yes’ or ‘no’.	Is it important for you to have a structured day?	Closed question (Yes/No)
2.3.2	Interviewer or (in)formal carer	Asks a question with multiple suggestions for the respondent to choose from.	Do you like reading newspapers or magazines?	Closed question (multiple options)
2.3.3	Interviewer or (in)formal carer	Asks an open question. This includes questions on demographics.	Why is that important? What kind of activities do you do together?	Open questions
2.4 Sequence – 1 option possible
#	By	What	Example	Code-label
2.4.1	Interviewer or (in)formal carer	Continues with a new topic of the interview by asking a new question. The new topic is a new topic in the interview guide.	So I wanted to talk to you about XX. Can you tell me what you like about that?	New question
2.4.2	Interviewer or (in)formal carer	Continues with the current topic of the interview by asking a follow-up question	You like playing football? Why is that?	Follow-up question
2.4.3	Interviewer & (In)formal carer	The interviewer or (in)formal carer rephrases the question to support understanding by person with dementia. Could be by means of using different words, but also different answer categories (e.g. by giving options)	What would you like doing? I don’t know. Reading a lot of books? Yes.	Rephrasing question
2.4.4	Interviewer & (In)formal carer	Confirms or checks what has been said by means of summarizing.	So you told us you like reading books because you enjoy exploring new stories?	Confirming question
2.4.5	Interviewer & (In)formal carer	None of the above		Other sequence question
2.5 Nature of the question – 1 option possible
#	By	What	Example	Code-label
2.5.1	Interviewer or (in)formal carer	Interviewer asks a broad question that invites the participant to think about something that is not existing/happened yet.	What if … ? What would you like the technology to support you with?	Hypothetical questions
2.5.2	Interviewer or (in)formal carer	Asks a question not for information-seeking but more rhetorical in nature	You enjoyed your holiday?	Rhetorical questions
2.5.3	Interviewer or (in)formal carer	Interviewer asks to reflect on a certain answer. Includes questions about feelings.	Why do you like watching television?	Reflective question
2.5.4	Interviewer or (in)formal carer	Interviewer asks questions that require memory or recall. Includes questions about certain (recurring) events.	What do you do on a Monday?	Recall question
2.5.5	Interviewer or (in)formal carer	None of the above		Other nature of question
2.6 Content –1 option possible
#	By	What	Example	Code-label
2.6.1	Interviewer or (in)formal carer	Asks a question with a positive connotation or experience (e.g. about enjoyable events, hobbies)	Did you enjoy playing soccer?	Positive wording
2.6.2	Interviewer or (in)formal carer	Asks a question with a negative connotation or experience (e.g. about lost abilities, missing XYZ)	Do you miss driving a car?	Negative wording
2.6.3	Interviewer or (in)formal carer	No clear indication of atmosphere.		Neutral wording

Table

Answer length – 1 option possible
#	By	What	Example	Code-label
	Person with dementia	Gives an answer with 1 word	Yes No	One-word-answer
	Person with dementia	Gives an answer with 2 to 5 words.	Ehh, yes, yes I do Yes, I like doing that.	Short answer
	Person with dementia	Gives an answer with more than 5 words.	Yes, I do that on a regular basis. For example, in the morning.	Long answer

Table

Nature of the answer – 1 option possible
#	By	What	Example	Code-label
	Person with dementia	Person reflects on something that is not existing/happened yet.	I think I would like to use it during the mornings.	Hypothetical answer
	Person with dementia	Person understands the rhetorical question and replies briefly.	Of course I liked it.	Rhetorical answer
	Person with dementia	Person reflects on a certain situation.	I like to keep up with the world, therefore I watch television.	Reflective answer
	Person with dementia	Person is able to recall a specific moment.	On a Monday I go to the store.	Recall answer
	Person with dementia	None of the above		Other nature of answer

Table

Another response to a question (not an answer)
	Person with dementia	The person with dementia answers a question with “I don’t know”; which can be either a lack of understanding or just a valid answer.	Would you like having such a system in your home? I don’t know.	PwD does not know
	Person with dementia	Checks with (in)formal carer if their answer is correct or specifically asks for support in answering	I think I like doing that, don’t I? I don’t know, do you know?	PwD asks for help
	Person with dementia	Confirms what is answered by the (informal) carer.	Do you like reading? Yes, she does Yes, I do	PwD confirms answer

Table

Response of carer after answer of PwD – none or 1 option possible
#	By	What	Example	Code-label
	(In)formal carer	The (in)formal carer confirms the answer given by the person with dementia.	Do you like reading? Yes, I do. Yes, he indeed does.	Carer confirms answer
	(In)formal carer	The (in)formal carer extends an answer given by the person with dementia. The interviewer is prompted with a new topic.	Do you like XX? Yes. Yes, and he also plays piano. Really, can you tell us why?	Carer extends answer
	(In)formal carer	The (in)formal carer corrects an answer given by the person with dementia.	Do you like XX? Yes. No, you don’t like that	Carer corrects answer

Table

3.2 When answer given by the carer – 1 option possible
#	By	What	Example	Code-label
	(In)formal carer	The (in)formal carer gives an answer to the question, referencing to their own experience.	You like to go outside? Yes, I like that.	Carer answers about themselves only
	(In)formal carer	The (in)formal carer gives an answer to the question, referencing to the experience of the person with dementia	You like to go outside? Yes, he really likes that.	Carer answers about person with dementia
	(In)formal carer	The (in)formal carer gives an answer to the question, referencing to a joint experience.	You like to go outside? Yes, we like that.	Carer answers about themselves and the person with dementia
	(In)formal carer	None of the above	How is that called? It has a new name.	Carer answers other

Table

3.3 When no answer is given
#	By	What	Example	Code-label
	PwD and/or (In)formal carer	No one gives an answer; code is given to the question.	You like to go outside? We happen to drink coffee often. Yeah, let’s get some.	No answer is given

Table

4.1 Actions by all
#	By	What	Example	Code-label
4.1.1	All	Use of visible elements in the environment, introducing physical objects to the conversation, interacting with elements in the home, mentioning an object in the room	Do you see that bird over there? I can see a piano in the room Take a cookie!	Introducing attributes
4.1.2	All	Creative use of words without a purpose; making a joke	It is a miracle that we are still together. - haha I don’t remember a thing - haha	Jokes
4.1.3	All	Stay silent after a question, answer or other remark.	What do you think? […]	Stay silent
4.1.4	All	Laughter is identified (either joint or individual).	And that’s how our days roll. [Everyone laughs]	Laughing
4.2 Actions by interviewers and/or carers
#	By	What	Example	Code-label
4.2.1	Interviewer & (in)formal carer	Showing empathy by understanding statement, comforting statements	I can see why that is difficult or It is okay if you don’t want to answer this question.	Empathy & Understanding
4.2.2	Interviewer & (in)formal carer	Responding with a positive and recognizing statement.	That sounds as a lot of fun! Wow!	Positivity
4.2.3	Interviewer & (in)formal carer	Giving a compliment or asking a question containing a compliment	You did a good job So you were very good at singing?	Complimenting
4.2.4	Interviewer & (In)formal carer	Using words that are e.g. English or related to technology	Do you use a GPS-system?	Difficult wording
4.3 Actions by interviewers alone
#	By	What	Example	Code-label
4.3.1	Interviewer	Sharing information without a clear question, can be a personal story but also information related to a topic that is discussed.	I remember that from my grandma. I thought that home care was cheaper	Story interviewer
4.3.2	Interviewer	Offer help; not in word-finding or interview related goals, but in something that participants bring up	I can have a look at your computer after the interview is done	Help interviewer
4.3.3	Interviewer	Using term indicating structure	So we already talked about XX, now let’s XX, wrap-up and conclusions	Structure terms

Table

5.1 Positive responses of person with dementia
#	By	What	Example	Code-label
	Person with dementia	Was satisfied. S/he expresses clear positive laughter and/or replies in cheerful, enthusiastic manner (e.g. choice of words “amazing”).	I had such an amazing time And that’s how our days roll. [Laughs]	PwD responds positively
	Person with dementia	Asks for response-time implicitly (“Eh”) and/or stay silent and/or asks for response-time explicitly (“Let me think”).	Eh … … Let me think …	PwD responds positively
5.2 Negative responses of person with dementia
#	By	What	Example	Code-label
	Person with dementia	Was dissatisfied; expressing unease or laughing out of discomfort/shame; using negative wordings	It is something really disgusting Haha, well, it is not much really.	PwD responds negatively
	Person with dementia	Was distracted, says something relating to being distracted or doing something else, unrelated to interview questions and goals.	Do you see that bird over there? Sorry … what did I miss?	PwD responds negatively
5.3 Neutral responses of person with dementia
#	By	What	Example	Code-label
	Person with dementia	All other responses, including possible ambiguous laughter.		PwD responds neutral.

Table

#	By	What	Example	Code-label
6.1	(In)formal carer	Negative interaction between persons with dementia and informal carer; disagreeing with each other, belittling or derogatory comments	You cannot do that anymore Yes I can No you can’t He does not understand that anymore -sighs- That’s true, right? If you say so …	Uncomfortable interaction (Includes PwD responds negatively)
6.2	Interviewer & (in)formal carer	A sequence of multiple questions and answers that results in a wandering about a topic that is not directly attuned to the interview set-up.	Your father is not on the tapes. Your father? No yours, for example the one with XX Yeah but I never had him on tape. That’s what I said. But the other tapes are about …	Off-topic