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Table 2 Main topics, their definition and verbatim examples from transcripts (P = Patient, A = Relative, E = Professional)

From: Which medical and social decision topics are important after early diagnosis of Alzheimer’s Disease from the perspectives of people with Alzheimer’s Disease, spouses and professionals?

Topics Statements
Medical treatment: All measures applied by healthcare professionals (including consultations, disclosure of test results and diagnosis, drug treatment etc)
Getting in contact with the medical system P2: “We have got many good physicians in our social environment, also psychiatrists, and my husband consulted them”
P6: “…I didn’t want that, but my husband kept at it. He said: You have to do something!”
Referral to specialists A1: “Our son immediately made an inquiry and she (patient) was sent to the memory clinic soon after”
P3: “… and then we have seen a psychologist once in a while and he…. recommended your clinic”
E1: “First position is normally the GP, then a medical specialist, then transferred here”
E1: “There are usually relatives with the patient…That a patient gets in touch himself, does happen, but seldom”
E3: “… it occurs that patients come by themselves. Primarily if they live alone…..but normally, if somebody lives in a partnership, relatives get in touch and contact us”
Diagnostic workup P6: “Something is wrong with my cerebrospinal fluid. There are two things contained in, which pointed to Alzheimer’s Disease…”
Education and patients’ awareness of the disease P4: “I know the diagnosis….I know, that it progresses slowly”
P6: “It was written in a medical report, that it is suspected AD…. I wouldn’t like to come to an end like my sister and my mum, that I don’t know anything at all at the end”
P 2: “This is still a mystery for me. My disease is a mystery, how this has happened…It meant, that I have to go to the psychiatric hospital, but what really takes place and what is the impact of the disease…?”
E3: “Anyway above all they were educated about the medical things…..about the process of the disease”
E9: “I think, that most people struggle pretty hard to have a basic understanding, to understand a bit better what it is all about…”
Drug treatment, behavioural interventions, study participation P 6: “Conversations, read the newspaper, memory training, read newspaper articles and so on”
A 3: “One day a doctor asked if we want to participate voluntarily in a pharmaceutical study”
E 3: “They get Aricept or Exelon or the usual remedies. Additionally referral to a General Practitioner, treatment of depression…, even more regular appointments”
E5: “They usually get pharmaceutical treatment…after the outpatient clinic…activating groups, daycare, care groups, memory training, even such a thing”
Assistance by family/external assistance and help: (Social) support provided by family members or external help
Desired assistance P6: “Anyway, I always refused outside help actually. Because I think, that husband and wife should be around for each other. And through this, my husband feels good, he is happy to do that”
P4: “My family will care for me if I can’t do it”
A1: “I’ve done everything myself. That works, because I’m at home. But this is not the case for everyone”
A3: “Being the patient’s companion is in any case…..a full-time job, with the result that I can forget about my old job…..We discussed that at that time and our sons said that they are available anytime if needed and want to support their mum”
A2: “But there wasn’t a problem for me, nursing and all such things. I’m very resourceful”
A3: “I would like to have a Bosnian cleaner, if it would be possible”
E8: “This is often the case: relatives promise their mum she never has to go in a retirement home. I think they can’t imagine the consequences if their mum develops severe dementia”
E3: “Duties are arranged completely differently. And the wife has to completely start learning things from the beginning and complete things e.g., forms she has never done before. These are details, but it could become very difficult in individual cases”
E2: “Well, it is all new at the beginning and it is important for relatives to build a social network”
E9: “I think there are enough options to inform oneself and aids, initially, as long as it works well”
Housing situation P 5: “…as long as I can stay in my flat”
P5: “Yes, I was there (residential home)…, when it opened. I went there and looked at it”
A3: “…and now I see my dedication to keep as active as possible, to be able to accompany her”
E1: “Well, only seldom someone is so prepared or would like to be prepared or that he just knows he will go there (residential home). This is less common”
E6: “The majority of the relatives would like to keep patients at home as long as possible”
E8: “It is difficult for those who live alone…..The question actually is: Who is helping elderly people living alone with in the early stages of dementia?”
Legal issues: All issues relating to civil law (including legal capacity, regulations by law, last will, official guardianship, insurances etc)
Legal issues P3: “The two of us have done it, also the advance health care directive”
A3: “Advance health care directive, health care proxy….and we have accordingly executed documents along with our sons…..the only thing missing is the last will…..Well, that remains to be done. That is on the list and we will do it as fast as possible”
E 1: “The big issues of people with mild dementia are health care proxy, i.e., the legal regulations to be arranged”
E 9: “In the early stages it is about clarification….and legal provision, power of attorney and as for me advance health care directive”
E8: “The thing is mostly that another person such as a legal guardian or an authorised person should represent the dementia patient’s desires….People can’t imagine at the beginning that it might come to this….I think it would be easier for relatives if professionals tell them how serious it becomes if someone is in late stages of dementia”
E10: “A big issue is car driving. The problem is that they still drive their car and we have to fight that they give up driving….and we have to call the police”
Coping with illness: Topics were categorized here when they affected the individual person and his or her coping with the disease. The issue car driving for example was categorized into “civil rights” when there was a debate about driving capacities and insurance issues but categorized under “subjective response” when the ability to drive a car was mentioned in the context of personal autonomy
Patients’ affective reactions to their diagnosis and symptoms P2: “This is a massive and terrible feeling for me”
P4: “Relief, because I knew now I have got something”
A 4:”Actually quite calm because the situation wasn’t bad yet”
A3: “In my mind this was an essential shock for my wife. She is living with it, but she hasn’t really accepted the diagnosis until today”
E3: “They are sinking into depression…..The person concerned, many say, doesn’t feel like doing anything, is retired, doesn’t want any contact”
E1:”Certainly also anxiety, fright and sadness, but even so a piece of relief”
E5: “Then clients don’t hear the diagnosis dementia too much; they hear rather that they have got depression”
Relatives’ difficulties of comprehension/handling with patients P3:”And there isn’t comprehension that could also help me…”
A3: “One of the essential points is the deficit in short term memory. Just to accept it as it is and for Christ’s sake not always spell it out…”
A6: “It often causes trouble, if she asks me for the third time, then I don’t respond to her in a friendly way…”
E1:” About coping with everyday life. This is the most difficult….how can I handle it, the disease and the deficits, which happen every day and everyday life constitutes a challenge”
Patients’ autonomy vs. paternalism by relatives or professionals P6: “Not even my children suspect it (that I have dementia)….But I will tell them, when I think it is right”
P2: “My husband talks to the physicians and is more familiar with that. I was present during the consultation, but I wasn’t able to participate actively. I’m sitting nearby, half-involved. I haven’t much knowledge, which my husband and the physicians have”
P3: “Subsequently, my wife always checked the phone, to see with whom I have spoken”
A5: “Then we participated in a study….and then it happened with the study and we said: Yes, we participate!”
E10: “The issue is: I want to maintain my autonomy. I don’t want to be patronised”
E3: “Duties are arranged completely different”
E10: “…the relationship constellation gets mixed up totally and about the whole story is: Now they decide about me!”
E1: “…participates or could participate at that time, it was still possible”
E3: “The issue of driving is a very difficult issue, primarily for men. You don’t have to stop driving immediately with getting the diagnosis, but you have to discuss it”
“Carry on as normal” P5: “And I try to do everything possible, as long as I possibly can”
P2: “My husband won’t work eternally, still a few years. This isn’t arranged yet”
A 2: “Actually nothing. We take it as it comes and we make the best of it”
A4: “So I didn’t worry at all (about the disease) in the beginning, because I thought it couldn’t get so bad”
E1: “Many people have got a big longing for continuing with what had been important all their life…. What represented my life, what I have always done, I would like to keep doing it”
E2: “…there is a time slot… for legal questions e.g., guardianship law, health care proxy or advance health care directive”
E9: “There are some specialists reading literature and confronting me with questions about the latest (study) results and some are very well informed. But this is more of an exception”
E9: “…I think you have to accept, if someone doesn’t want to deal with it so early”