Themes derived from studies included in the review
| Theme | Second-order constructs | Illustrative quotations (first-order constructs) |
|---|---|---|
| Seeking a diagnosis | ||
| Timeliness of diagnosis | Spouses wanted timely diagnoses with accompanying education about the disease, its course and management. Because the diagnosis was often delayed, families were disadvantaged in their ability to make long-term plans. (62) | Caregiver: “We finally got a doctor to say MCI, but is something more, and go to see a neurologist … it took another 6 months. … My husband was probably one of the few people that would plead to be told he had Alzheimer’s.” (62) |
| Diagnostic process | Dementia was attributed to “frailty” and to a tendency of people to “lose their mind” as they grow old. Words most often used to express the idea of dementia included “senile,” “confused,” “just getting old” and “old timer’s disease.” (39) | Caregiver: “What do you expect [changes in cognition and behaviour]? He’s 72 years old.” (39) |
| It takes a frustratingly prolonged process of up to several years to reach a diagnosis, whether by way of primary care or specialist in Alzheimer disease. (58) | Caregiver: “A nightmare.” (58) | |
| Several caregivers reported that their doctor was unsure or did not know what the problem was. (40) | Caregiver: “I think doctors are reluctant to diagnose. I think their reluctance is probably for fear of discouraging family and the patient and also that they are not sure. They can’t be sure, so they’re just reluctant to diagnose as Alzheimer’s.” (40) | |
| Assessment process was probing, demoralizing and frightening for several patients. (55) | Patient: “It was embarrassing … I couldn’t even draw the house … even a child could do that … it is embarrassing. Maybe I would have done better at home … if I wasn’t so nervous.” (55) | |
| Reaction to diagnosis | Most patients and their partners perceived the diagnosis as a confirmation of their suspicions. Patients and caregivers who had no suspicions of dementia tended to perceive the diagnosis as a shock. It is important to know what their expectations are about the diagnosis. (46) | Caregiver: “In the past his mother and 2 brothers had suffered from dementia, so we had already considered the possibility.” (46) “I didn’t expect him to get this; it’s in my family, not his” (starts to cry). (46) |
| Accessing supports and services | ||
| Prolonged path to supports and services | Many caregivers and patients reported that their physician did not discuss next steps or provide current information about community-based services. (42) | Caregiver: “I ran into the problem that they give you the information, but they don’t keep it current and up-to-date. You call places … and you get answering machines or you get disconnected or get told “we don’t do that service anymore” … that’s kind of frustrating.” (42) |
| Caregivers felt that the whole system was in disarray: despite repeated efforts, they were unable to acquire information about what supports existed, to make contact with appropriate people or to secure services in a timely manner. (61) | Caregiver: “One day I spent 3 hours on the phone repeating the same thing over to different people … nobody knows, whoever you ring, nobody is connected with anything.” (61) | |
| Specialist services | The process of diagnosis was viewed negatively by caregivers when the dementia was misdiagnosed or not diagnosed. In contrast, the diagnostic process was viewed positively when caregivers felt that specialists had made an accurate diagnosis of dementia. (24) | Caregiver: “Jim had been going to an internist who would do anything but say Alzheimer’s … and when Jim finally went to [neurologist], why he said, ‘It’s Alzheimer’s.’ That’s what it is, but doctors are afraid to say it.” (24) |
| Meeting patient and caregiver needs through supports and services | All participants eventually consulted a family physician about the changes they had observed in their spouse or family member, and many expressed intense disappointment in the responses they received. (61) | Caregiver: caregiver was told to “look it up on the Internet, which wasn’t a very helpful remark – I wanted support, human support.” (61) |
| Many participants agreed that their inability to get information and support when they first needed it dampened their efforts to find information. (61) | Caregiver: “So I sort of pulled back home and thought oh well, I’m imagining all of this, it’s not happening.” (61) | |
| Some participants’ “quest” for information was productive and generated very positive feelings. Sometimes extremely supportive individuals from aged care and dementia support organizations were encountered. (61) | Caregiver: “I cried over the phone for an hour … and they listened to me … she says go on, go on talking, they were absolutely wonderful.” (61) | |
| Addressing information needs | ||
| Delivery of information | Written information was optimal because caregivers and patients were able to refer back to material when they needed to. (27) | Caregiver: “The social worker gave us a lot of information. It is sitting on our kitchen table … we have read some of it.” (27) |
| Other suggestions made by patients spoke to the emotional aspects, including a need for empathy. (53) | Patient: “There should be more openness to emotion.” (53) | |
| Caregivers commonly found that confidentiality impeded them from receiving information, but communication improved if it was clear that the patient gave his or her permission. (65) | Caregiver: “On the phone the people would say ‘well we’d have to speak to your mother first to get permission to talk about her issues’ because you know they couldn’t say anything to me … I have to get my mother’s permission to represent her.” (65) | |
| Quantity of information | Some of the patients’ perspectives included giving more information about the diagnosis and providing more follow-up information. (53) | Patient: “I would like it in layman’s language.” (53) |
| Caregivers wanted information but not all at once. (65) | Caregiver: “I found, when he was first diagnosed, it was an awful lot to take in, you’re given all this information on what you should be doing, you don’t really want to know it.” (65) | |
| Caregivers expressed feelings of frustration toward health care providers (especially at the initial stage of the illness) for not providing them with adequate information about the illness and references for support and resources. (27) | Caregiver: “When you take your loved one to be tested, they should inform you of the resources available … they should tell you what to expect, where to go and what to do … nobody tells you what to expect in different stages … they tell you what to expect when you have a baby, but nobody tells you what to do when you reach that stage of life … they just don’t tell you.” (27) | |
| Information content | Accessing the health care system, contacting health care professionals and knowing what kind of resources were available and how to access them were some of the issues discussed by caregivers. (27) | Caregiver: “We need help with hygiene, grooming services, to take a bath, a shower, wash her hair, help with respite care, nursing homes, home health care agencies.” (27) |
| Most comments were about not enough detail being given about the memory tests, the diagnosis and, in particular, the progression of dementia. (53) | Caregiver: “I would have liked more about the disease and what it means in the long term.” (53) | |
| Disease management | ||
| Knowledge of health care providers | Lack of clinical knowledge about dementia, inattention to patient’s cognitive deficits, and/or unconcern for the well-being of the patient was upsetting to caregivers. (26) | Caregiver: “We changed to a lady doctor and the new doctor seemed to be very ill-prepared to treat an Alzheimer patient. We have since changed HMO’s and [my wife’s] new doctor seems to have little interest.” (26) |
| Caregivers level of understanding of dementia was greatly influenced by the clarity and consistency of information they received from health care professionals. (29) | Caregiver: “The doctors with whom our mother consulted knew very little about dementia. They simply told us that her presentations were a form of senility.” (29) | |
| Initiating management | Sometimes caregivers perceived that their family physician would not have referred the patient to secondary care for assessment, diagnosis and treatment prescription if the caregiver have not been proactive themselves. (64) | Caregiver: “Now you see if I hadn’t gone and asked the doctor about it I don’t suppose he would have put him on them, he wouldn’t have sent us to see about them.” (64) |
| Several families found that assistance came only with prompting. (62) | Caregiver: “Nobody told me that he shouldn’t be driving. Nobody asked the last 4 years … or told me about the driving.” (62) | |
| Communication and attitudes | ||
| Valuing the perspectives of patients and caregivers | A number of caregivers reported feeling that their concerns were not taken seriously. (26) | Caregiver: “The doctor was not even aware of the memory loss — even though I mentioned it to him many times.” (26) |
| In cases in which an alternative diagnoses had been given, caregivers gathered and presented “evidence” to physicians for reconsideration. (45) | Caregiver: “… to my surprise my husband just started to get lost and that kind of thing … So I began to converse with his doctor about this and every time he go to the doctor he [the physician] would say that he didn’t have a problem. He just couldn’t see it. But I’d say ‘Doctor, you have to work with me because something’s wrong.’” (45) | |
| Impact on interaction | Open communication, helpful factual information and empathy went a long way toward family caregivers’ positive feelings about their interactions with the physician. (26) | Caregiver: “I felt the doctors did not want to give us the true diagnosis and were not open with us about it. Communication was poor and they were reluctant about discussing the hopelessness of the case with us. We needed honest discussion and their help in facing this tragedy. I needed to be told, ‘We are here to support and guide you through this.’” (26) |
| Physicians were expected to be compassionate, understanding, forthright and caring of the caregiver’s mental and physical health as part of the patient–physician relationship. (45) | Caregiver: “You have to have the kind of doctor that is caring and will take time to discuss this with you because if you don’t, if you have one that really doesn’t have time for you, it can be terrible.” (45) | |
Note: HMO = health maintenance organization, MCI = mild cognitive impairment.