What Impact Does the Diagnosis of Mild Cognitive Impairment Have on the Wellbeing,Everyday Behavior,and Healthcare Utilization of People and Their Carers? A Systematic Review

Abstract

Background:

Dementia is a major cause of disability and dependency globally. Mild cognitive impairment (MCI) is considered an early indicator of developing dementia. There are growing efforts to detect and diagnose MCI earlier; consequently, we need to understand the perspectives of individuals and carers regarding the implications of an MCI diagnosis.

Objective:

To systematically review qualitative literature to understand the impact of a MCI diagnosis on both the individual and their carers, focusing on wellbeing, everyday behaviors, and healthcare utilization.

Methods:

Key search terms were input into five databases. Studies were included if they were peer-reviewed qualitative research published in English that obtained perspectives of community-dwellers with MCI or carers and focused on either their wellbeing, everyday behaviors and/or healthcare utilization. The protocol was pre-registered on PROSPERO (CRD42021291995). Data was synthesized narratively.

Results:

Key findings from 15 eligible articles highlighted the negative impact of an MCI diagnosis on the wellbeing of both individuals and carers, due to stigma and limited understanding regarding diagnosis/prognosis. Changes in everyday behavior varied, particularly regarding motivation to engage with physical activity, hobbies and social opportunities. Both individuals and carers were sometimes dissatisfied with healthcare services; ineffective communication during clinical consolations highlighted as a reason for lack of trust in clinicians.

Conclusions:

Results indicate that an MCI diagnosis impacts both people with MCI and their carers across key facets of life. There is a critical need to effectively communicate the diagnosis and prognosis of MCI to support wellbeing and everyday activities and ensure trust in healthcare services.

Keywords

Alzheimer’s disease caregivers cognitive dysfunction early diagnosis mild cognitive impairment quality of life systematic review

INTRODUCTION

Approximately 50 million people are living with dementia globally, with numbers projected to rise to 82 million by 2030. 1 Dementia is considered the most feared diagnosis amongst older adults, 2 with informal carers (i.e., friends and family, herein referred to as “carers”) expressing concerns over disclosing the diagnosis to the person with dementia.3,4, 3,4 Dementia is a progressive condition, which means that people with dementia become more impaired and subsequently dependent on informal and formal care as the disease progresses. 5 Numerous studies have described negative emotional reactions to the diagnosis of dementia, including anger, anxiety, depression, despair, fear, and sometimes suicidal ideas.6 –8 However, most evidence suggests that people prefer to have the diagnosis disclosed to them as it helps them better prepare for the future; this can help with understanding the changes in their cognitive abilities and daily lives during the early stages of the condition.3,9, 3,9

People with mild cognitive impairment (MCI) are three to five times more likely to progress to dementia than people without; 10 it is a condition that is often considered a predementia phase. 11 This may pose an opportunity for clinicians to intervene early with modifiable lifestyle interventions and appropriate future care planning. 12 Increased awareness of this condition through public health campaigns, and seeking help early has increased the diagnostic rates of MCI in Western countries, but the consequences of receiving a diagnosis can be considerably daunting for the individual. 13 The effects of a dementia diagnosis on people and their carers, including the difficulties that they face are well reported;14 –16 however, the effects of a MCI diagnosis are less clear. The World Health Organization’s recent blueprint for dementia research highlighted the need to establish the implications of diagnosis of prodromal stages of dementia-causing diseases, such as MCI. 17

Based on our learnings from the dementia literature, three key areas may be impacted by an MCI diagnosis; these include psychosocial wellbeing, everyday behaviors, and healthcare utilization. There have been many studies examining health-related quality of life (QoL) of people with mild cognitive impairment. 18 Multiple quantitative studies have reported lower QoL scores in people with MCI compared to cognitively-intact older adults, with lower QoL associated with older age, being female, greater co-morbidities, depression and functional disabilities, and lower social support.19 –22 Regarding everyday behaviors, there has been little research conducted on the impact of a MCI diagnosis on lifestyle or daily behaviors; however, evidence from the dementia literature suggests that a diagnosis of dementia can impact routine behaviors and the use of cognitive stimulation and memory aids, as well as engagement in social activities and leisure activities.23,24, 23,24 For carers of people with dementia, their everyday behaviors are significantly impacted by their changing roles and responsibilities relating to their care recipient. 23 We know that greater cognitive impairment has been associated with higher healthcare utilization; this higher healthcare utilization and costs were also observed years before dementia diagnosis.25,26, 25,26 People with MCI are likely to use healthcare services more frequently than their cognitively-intact counterparts.25,27, 25,27 Previous quantitative research suggested that people with MCI are also more likely to be hospitalized, perhaps contributing to higher costs. 28 However, the reasons for utilizing or not utilizing healthcare from the perspective of people with MCI and their carers isunclear.

There has been limited focus on the discrete aspects of psychosocial wellbeing that may be affected, including how people with MCI understand their diagnosis and prognosis, their response to and disclosure of the diagnosis to others, and how they cope with the condition; these are important areas where people with more advanced neurodegenerative disease have reportedly struggled. 23 Qualitative studies can obtain a more detailed, in-depth understanding of the perspectives and experiences of those impacted by an MCI diagnosis. Our aim was to systematically review the qualitative literature to explore how receiving an MCI diagnosis impacted on people and their carers in the community, with regards to their wellbeing, everyday behaviors, and healthcare utilization.

MATERIALS AND METHODS

Search strategy

Five databases (Web of Science, Scopus, Medline, Embase and Psychinfo) were searched using appropriate key terms relating to MCI, patient and carers, wellbeing, everyday behaviors, and healthcare utilization. The search was carried out across two timeframes to include published articles from 1 January 2004 up until 21 September 2022, and updated again from 21 September 2022 to 28 April 2024. This systematic review was registered on PROSPERO (Reference: CRD42021291995). Figure 1 highlights the review process.

Fig. 1

Flow chart depicting identification of included studies following PRISMA guidelines (initial search). 30

Fig. 2

Flow chart depicting identification of included studies following PRISMA guidelines updated search. 30 *Note format of Psychinfo had changed when conducting the second search.

Eligibility criteria

Eligibility criteria for articles included in this review are outlined below in Table 1.

Table 1

Inclusion and exclusion criteria

Factors	Inclusion criteria	Exclusion criteria
Publication type	Peer-reviewed articles	Published prior to January 2004 (when the term and concept of MCI was introduced 29 ). Conference abstracts, study protocols, systematic reviews, meta-analyses and grey literature.
Population	Diagnosis of MCI/carers of people with a diagnosis of MCI	Focused on other age-related/neurodegenerative conditions (e.g., Parkinson’s disease)
		Those without a clinical diagnosis; Subjective cognitive impairment
Setting	Living in the community. Studies that included both community-dwellers and aged care residents needed to present data for each group, separately.	Where it was explicitly stated that participants were residents of aged care facilities (i.e., nursing homes).
Study type	Qualitative cross-sectional or longitudinal research studies	Clinical trials, randomized control trials, intervention studies.
Topic	Include one of the three concepts: everyday behaviors, wellbeing, healthcare utilization.
Language	Published in English

Data extraction

All search results were downloaded to Endnote and duplicates removed. All titles, abstracts and full texts were screened independently by two authors (EC, KB) with the aid of Rayyan online software (https://www.rayyan.ai); this software allowed both authors to record their reasoning against the inclusion/exclusion criteria. They met remotely via video conference to discuss any conflicts. Disagreements were resolved by discussion with a third reviewer (RMA), if necessary. A data extraction form (available on request) was produced on Excel and the following data was extracted: study aim(s); diagnostic criteria used to define MCI; study design and type of study (i.e., qualitative methods, cross-sectional, longitudinal); demographic information (i.e., age (mean, median, range, standard deviation), sex (frequency), ethnicity (frequency)); participant group (i.e., people with MCI/carers (n, frequency)); and qualitative themes, subthemes, descriptive data and quotations relating to the impact of MCI on wellbeing, everyday behaviors, and healthcare utilization.

Risk of bias in individual studies

Risk of bias was assessed using an appropriate Critical Appraisal Skills Programme Checklist (CASP). 31 This involves asking ten questions around three key appraisal points: are the results of the study valid?, what are the results?, and will the results help locally?. We recorded a ‘yes’, ‘no’, or ‘unclear’ answer for each of the first nine questions (see Supplementary Table 1). Question 10 was a descriptive question regarding the value of the research. For the purposes of this work, any article that obtained 9 ‘yes’ answers was scored ‘good’, 6 to 8 ‘yes’ answers was scored ‘moderate’, and 5 or below was scored‘poor’.

Data synthesis

A narrative synthesis of the data was undertaken. 32 To begin, a preliminary synthesis was carried out to develop an initial description and key findings of included studies, followed by a further more in-depth exploration of the relationships within and across these findings in included studies. Finally, overarching themes and subthemes relating to the research aims were identified.

RESULTS

Overview of findings

A total of 9,985 papers were identified. After removing duplicates (n = 2,009) and screening titles (n = 7,976), abstracts (n = 233) and full text papers (n = 62), 14 articles met our inclusion criteria (see Table 2). This search was updated on 28 April 2024, an additional article was included, giving a final total of 15 articles. Included articles comprised of qualitative studies that interviewed people with MCI only (n = 4),33 –36 carer/family member only (n = 3),37 –39 and people with MCI/carer dyads (n = 8).27,40–46 , 27,40–46 Studies were conducted in the USA (n = 5), UK (n = 2), Germany (n = 1), South Korea (n = 1), the Netherlands (n = 1), Taiwan (n = 2), Sweden (n = 2), and Ireland (n = 1)). Sample size of participants included in the different studies ranged from eight to 168 adults. Most studies were rated as moderate-good quality (Supplementary Table 1); those with the lowest score often omitted detailed information regarding ethical processes. Table 3 describes the key themes that emerged related to wellbeing, everyday behaviors, and healthcare utilization, and are discussed below.

Table 2

Key demographics of included studies

Study	Participant demographics	Diagnostic criteria	Country	Study design
Gomersall et al. 40	18 PWMCI, 18 relatives (4 daughters, 6 husbands, 6 wives, 2 sons)	Non-specified	UK	Qualitative- semi structured topic guides
	60–93 y (mean = 77.4±8.6) MCI, 42–87 y (mean 66.4±16 y)
	Nine female, nine male
Renn et al. 33	11 PWMCI	Non-specified	USA	Qualitative, photo-elicitation interview
	57–79 y (mean 69.82±5.88)
	5 female, 6 male
Lohmeyer et al. 27	9 PWMCI, 10 caring relatives, 25 others	Non-specified	Germany	Qualitative, focus groups and face to face interviews
	Over 18 years: not specific for the PWMCI group
	Not specific for PWMCI group, total 5 male caring relatives, 27 female caring relatives, 7 male tested persons and 5 female tested persons
Carlozzi et la. 37	32 carers	Generally, Petersen et al criteria, 2004 47	USA	Qualitative- frequency analysis following focus groups
	69.41 years old (average, SD = 7.78)
	80% female, 20% male
Banningh et al. 34	8 PWMCI *	A multidisciplinary diagnostic assessment, resulting in Petersen’s amnestic MCI diagnosis 48	The Netherlands	Qualitative- interview
	58–83 years old (Mean = 74.8, SD = 8.1)
	7 female, 1 male
	*Recruited until data saturation was achieved
Choi and Kim 35	20 PWMCI*	Non-specified	South Korea	Qualitative- theoretical sampling methods following interviews
	68–87 years old (average 75 years old)
	8 Female, 12 male
	*Recruited until data saturation was achieved
Lu and Haase 38	10 spousal carers*	Medical diagnosis for at least 12 months using criteria specified by Peterson and colleagues 47	USA	Qualitative-empirical phenomenology adapted from Colaizzi’s phenomenological method 49 following interviews
	10 adults aged over 20 y.
	5 male, 5 female
	*Recruited until data saturation was achieved
Dean et al. 44	23 PWMCI, 20 advocates*	Dependent on clinical criteria used by diagnosing clinician- 70% met the Peterson diagnostic criteria 47	UK	Qualitative – semi-structured interviews
	PWMCI 63–86 y (77.8 y mean), advocates 42–84 y (69 mean)
	PWMCI male 13 female 10, advocates 2 male 18 females (13 spouses, two offspring, three other relative, two friends)
	*Recruited until data saturation was achieved
Kuo and Shyu 45	10 PWMCI, 10 carers*	Non-specified- diagnosed by a physician with a specialty in neurology.	Taiwan	Qualitative- grounded theory methodology following interviews
	Carers 39–67 years (50.8 mean SD 11.42), PWMCI 68–85 years (75 average SD 6.32)
	Carers 9 female 1 male, PWMCI 7 male 3 females
	*Recruited until data saturation was achieved
Berg et al. 36	17 PWMCI	Non-specified: medical history classification of two/three on Global Deterioration Scale 50	Sweden	Qualitative – thematic analysis following interviews
	57–86 y (mean 72 y)
	11 male, 6 female
Roberto et al. 43	40 couples- PWMCI and their spouses	Non-specified	USA	Qualitative- grounded theory methodology following interviews
	PWMCI 74.6 (SD±7.0, carers 71.1 (SD±8.2)
	PWMCI 5 female 35 male, carers 35 female 5 male
Johansson et al. 42	5 PWMCI and their carers*	Key symposium 47	Sweden	Qualitative- explorative design following interviews
	PWMCI 66–77 (72 SD 4.8), relatives 66–77 (41 SD 4.3)
	PWMCI male 2 female 3, relatives 3 males 2 women
	*Recruited until data saturation was achieved
Roberto et al. 41	56 families (PWMCI + 2 relatives)	Five commonly used criteria in their assessment protocol: (a) complaint of memory loss, (b) minimal interference with activities of daily living, (c) normal cognitive functioning, (d) memory loss uncharacteristic for the person’s age, and no evidence of dementia 51	USA	Qualitative-caregiving stress process framework following interviews
	PWMCI 76.5 (7.06 SD), Primary relative 66.8 (13.19 SD), Secondary relative 50.6 (12.23 SD)
	PWMCI 22 female 34 male, primary 45 female 11 male, secondary female 42 male 14
Wang et al. 39	13 family carers*	Core clinical criteria for MCI as recommended by the National Institute on Aging- Alzheimer’s Association 11	Taiwan	Qualitative- grounded theory methodology following interviews.
	58.5 mean (SD 14.2)
	Male 7, female 6
	*Recruited until data saturation was achieved
Munawar, et al. 46	47 PWMCI 72 (54–92)	Multidisciplinary diagnostic assessment involving comprehensive interview, collateral history, physical examination, neuropsychological testing and diagnostic investigations	Ireland	Qualitative – mixed methods, with interviewers selecting the most appropriate option based upon the response.
	36 family carers 61.6
	PWMCI 22 female 25 male
	Family carers 28 female 13 male

PWMCI, People with MCI.

Table 3

Key themes within each area of interest, relating to both people with MCI and their carers

Wellbeing	Perception of diagnosis	Everyday Behaviors	Healthcare utilization
People with MCI
Disclosing diagnosis:	•Confusion regarding the term MCI, with the label a form of uncertainty27,40, 27,40	Physical and dietarychange:	AD support groups/memoryclinics:
•Fear of stigma27,33,34,42 , 27,33,34,42	•Experience worries and relief simultaneously27,40, 27,40	•Participants not changing their behaviours 40	•Main desired outcome was acure 40
•Importance of good friends/family to understand the diagnosis33,35,36,42 , 33,35,36,42	•Relief not dementia/AD36,44,46 , 36,44,46	•Consciously trying to remain independent36,41–43,45 , 36,41–43,45	•Found groups important to help them with understanding their condition27,36, 27,36
	•An opportunity for inner reflection 33	•Uptake in cardiovascular exercise33,35, 33,35	•Memory clinics fell short of expectations 27
	•Negative experiences only 34	•Active engagement in physical activity and dietary changes positively affected their lives33,35, 33,35	•Ambivalent with the lack of information provided 44
	•Normalized forgetfulness (approach response)34,36,41–43 , 34,36,41–43	Approaching dementia preventative behaviors:	•Assessment process unpleasant, and not appropriate in comparison with their symptoms 44
	•Participants concerned over development of dementia27,33–36,40 , 27,33–36,40	•Began informal self-management33,34,40,42,46 , 33,34,40,42,46	•Information not provided at an appropriate level 42
	•Could not recall diagnosis 46	Social support:	Trusting healthcare professionals:
	Understanding the diagnosis/prognosis:	•Volunteering to improve social interaction 33	•Healthcare services provide a reassuring source of support33,40,42 , 33,40,42
	•Hypervigilance regarding possible connected symptoms 27	•Through spouses and friends36,41,44 , 36,41,44	•Use healthcare services in order to remain relatively unaware of the condition 40
	•Prefer not to know the diagnosis27,40, 27,40	Hobbies:	•Clinical testing not as reliable as their lived experiences 40
	•Accept the diagnosis and what it represents33,42, 33,42	•Giving up previous activities that brought them joy33,34,43 , 33,34,43	•Struggle with the diagnosis as lack of trust with clinicians 40
	•Felt over-protected by relatives 42	•Benefits of hobbies as they were stress reducing33,35, 33,35	•Concerns regarding over-medicating 40
	•Frustration as carers did not understand the condition 41	•Social withdrawal27,33,34,42,43 , 27,33,34,42,43	•Neutral/positive interactions with GP/HCPs44,46, 44,46
	•Suicidal ideation27,40, 27,40	•Social engagement33,46, 33,46	•Wanting more information from HCPs 44
	•Avoidance response 34		•Believed that their concerns were not being addressed 44
	•Problem solving coping 34
	•Approach/emotional response 34
	•Did not affect mood/self = esteem 46
Carers/Family Members
Depressive symptoms:	Understanding diagnosis/prognosis:	Physical health:	•Relief of having access to specialist due to diagnosis27,38,44 , 27,38,44
•Caring for persons with MCI increased risk for depressive symptoms42,43, 42,43	•Carers afraid of also developing MCI 40	•Carers have taken on extra roles since the diagnosis out of fear that their partner cannot do it themselves37–40,42,43,45 , 37–40,42,43,45	•Increased need for medical treatment themselves 37
•Unpredictable periods of heightened emotional distress38,45, 38,45	•Not accepting the diagnosis to be true41,45, 41,45	•Carers taken on extra roles prior/during diagnosis 46	•Lack of trust with clinicians as not told enough information/concerns not taken seriously27,42,44 , 27,42,44
•Feelings of frustration when PWMCI wanted to retain autonomy 41	•The more carers try to make sense of the diagnosis, the higher the levels of distress 39	Social network:	•Wished for more information38,44,46 , 38,44,46
•Inability to describe their role as not caring for a person with AD, but also not caring for a person with a physical disability 44	•Undertaking the process of ambivalent normalisation39,45, 39,45	•Isolated from their larger social network37,38,44 , 37,38,44	•Felt a lack of confidentiality- wished to discuss the symptoms of PWMCI in front of them 44
•Relationship imbalance37,38,41 , 37,38,41	•Offered clarity to carers27,38, 27,38	•Inadequate social support37,41, 37,41	•Assessment process in memory clinics unpleasant 44
•Experienced mild to moderate burden 46	•Lack of understanding37,39,41,44 , 37,39,41,44	•Decreased activities/engagement with leisure/volunteering and/or personal hobbies38,42, 38,42	•Felt more prepared for the future 42
Disclosing the diagnosis:	•Believe diagnosis to be a positive27,38, 27,38	•Friends and social group being their main source of support42,44, 42,44	•Satisfied with information provided 46
•Fear of stigma37,42, 37,42	•Radical life planning including suicide 27	Skills development:
•Felt their coping was not understood 42	•Relief that it was not AD38,46, 38,46	•Wished to be better able to manage their partner’s condition, including cognitive/social implications38,44, 38,44
	•Increase in family conflict due to disagreements between the persons with MCI and carer37,38,41,45 , 37,38,41,45	•Carers developed necessary skills and changes including behavioral management41,43,45 , 41,43,45
		•Protective preparation 39

Wellbeing

Most studies indicated that a diagnosis of MCI negatively impacted the quality of life and wellbeing of both people with MCI and their carers, with the main themes relating to understanding and accepting the diagnosis/prognosis, disclosing the diagnosis to friends and family, and depressive symptoms.

People with MCI

Eight studies reported peoples’ perceptions of receiving a MCI diagnosis and prognosis.27,33–36,40,44,46 , 27,33–36,40,44,46 A lack of understanding of their diagnosis emerged as a key theme,27,40,43 , 27,40,43 with participants struggling with clinical terminology like ‘cognitive’. 40 In one study, one participant perceived that the MCI diagnosis was provided by clinicians to in some way protect him from an Alzheimer’s disease diagnosis: “[healthcare professional said] “it is definitely not Alzheimer’s”. . . and I thought - why has he said that?. . . if you tell me I’ve got Alzheimer’s. . . I’m not long for this worId. . . because I can’t cope with that [. . . ] I thought. . . are they telling me [it’s MCI] because they don’t want me to do. . . (tails off)” (male, 60 years old). 40 Participants also felt that the word ‘mild’ did not reflect their difficulties, with a retired clinician stating “it could be. . . fairly defined by various people using it and I can understand it might, could lead to misunderstanding of the depth of the problems you’re experiencing”. 40 Conversely, some participants in another study perceived the term MCI as “actually a totally normal state”, 27 “everything still [is] all right”, 27 or “if at all, then only a tiny little bit of dementia”, 27 or that it “meant an increased risk for Alzheimer’s disease”. 27 The feeling of burdening family members was common, with some participants want to maintain a sense of control: “[I]f there really is such a diagnosis, then I want there’s somewhere to go. . . . I’ve already checked if there’s somewhere I can drive. I don’t know, Switzerland or wherever. There are a few things for not having to experience this. My life wouldn’t be what it used to be. And I don’t want that.”. 27 In contrast, another study reported that people with MCI had a varied understanding of their likelihood of disease progression, and many were relieved they did not have dementia. 46

Another key theme regarding wellbeing was disclosing the diagnosis to others.27,33–36,42 , 27,33–36,42 Some participants felt that it was important to have good friends that they could rely on as a “safe haven”,33,35,36,42 , 33,35,36,42 whereas others feared stigma surrounding the condition.27,33,34,42 , 27,33,34,42 Three studies also reported mechanisms for coping with the diagnosis and consequent symptoms, including strategies such as avoidance, 34 using memory strategies,34,42,43 , 34,42,43 and noting comforting thoughts. 34

Carers

One study discussed how distressing the MCI diagnosis was for carers, 39 with another study describing carers’ fears of also developing MCI. 40 In another study, although approximately half of informal carers could recall the diagnosis as “mild cognitive impairment”, a large proportion had not been informed of the chances of progression and did not understand the possibility of further cognitive decline. 46 Four papers described an increase in family conflict due to disagreements between the person with MCI and their carers;37,38,41,45 , 37,38,41,45 this was due, in part, to people with MCI denying that they had memory problems. 41 Another study described how carers felt the MCI diagnosis for their care recipient gave them clarity but also shared their fear of stigma with disclosing this diagnosis to family/friends.37,42, 37,42. Four papers discussed how caring for people with MCI increased their own risk of depressive symptoms or heightened their feelings of emotional distress.38,42,43,45 , 38,42,43,45 This was felt to be due to the frustration from intrapsychic strains (the changes in internal emotions, appraisals and personal characteristics due to the caring role) and a relationship imbalance, with one carer saying “because I feel like I’m the parent now; he’s not my husband, I’m his parent, his mother". 37

Everyday behaviors

The main themes that emerged in this area were changes in both physical activity and diet, social support/network, hobbies and skills development.

People with MCI

People with MCI increased their participation in physical activity in an attempt to slow disease progression, believing that it preserved cognitive function,33,35, 33,35 and acted on clinicians’ advice. 33 In one of these studies, participants reported adopting a Mediterranean diet so that they would be “less likely to have dementia issues”. 33 In contrast, another study reported limited changes in physical activity for those who perceived MCI as a usual part of ageing and not an illness; they had the desire to continue living “normally”. 40 There was also mixed evidence regarding changes in hobbies post-diagnosis, with some participants using hobbies to reduce their stress, escape from thinking about their diagnosis, and/or provide them with a sense of stability.33,35, 33,35 However, some participants with MCI also described giving up hobbies that they had previously enjoyed,33,34,43 , 33,34,43 and four studies reporting social withdrawal due to challenges following conversations and concern that friends may notice their symptoms.27,34,42,43 , 27,34,42,43 Participants stated “I don’t enjoy seeing people that I don’t know very well. . . I must hide what’s going on. I don’t want any difficult questions”, and “ there is a dread of being found out”, the latter relating to the stigma within the workplace. 33 However, one study highlighted engagement in volunteering as an opportunity for social interaction and a way to remain engaged. 33 In another study, most participants reported already engaging in risk reduction lifestyles (e.g., already physically active, already engaged in mentally stimulating activities), with a few implementing these changes following diagnosis. 46

Carers

Increased workload was a common theme discussed amongst informal carers of people with MCI. Seven studies highlighted how informal carers took on additional roles out of fear that their care recipient might not be able to do it for themselves,37,38,42,43,45 , 37,38,42,43,45 or could not be left alone.37,42, 37,42 Three papers discussed how carers felt socially isolated,37,38,44 , 37,38,44 such as losing close friends due to friends’ discomfort with the MCI diagnosis, 42 feelings of inadequacy with regards to familial support, 37 and lack of understanding as to what social support was needed.37,41, 37,41 Carers reported how they no longer felt like the same person that they were before and lost traits that they felt defined them. 37 In contrast, most family carers reported adopting responsibilities for the people with dementia around the time of diagnosis or in the years prior to diagnosis, such as financial planning, cooking, medication management, and remembering appointments. 46

Healthcare utilization

The main themes identified within the concept of healthcare utilization were the use of dementia support/memory clinics and trusting healthcare professionals.

People with MCI

Four studies described the use of dementia support or memory clinics, with mixed experiences.27,33,36,44 , 27,33,36,44 Some participants discussed how memory clinics ‘fell short of their expectations’, 27 with one study reporting how people with MCI were concerned about over-medicating. 40 Participants in another study described how they appreciated being connected with support groups, as they could speak to others with the same condition. 33 Trust in healthcare professionals emerged as a key theme, with four studies reporting how participants found it difficult to trust healthcare professionals due to lack of information and clarity regarding the diagnosis, and/or because they believed their concerns were not addressed.27,40,42,44 , 27,40,42,44 However, participants in three other studies found healthcare professionals to be a source of help and support, enabling them to better understand their condition.33,40,42 , 33,40,42

Carers

Carers in one study discussed varied healthcare utilization for their own personal health, with some participants reporting how caring had led to increased depression, pain and emotional stress. 37 They reported a greater need for medical treatment, while others suggested that they neglected their own health to prioritize their care recipients’ needs. 37 Three studies described how carers would request a doctor’s appointment on behalf of their partner/relative 41 , and believed that it was important to have a “foot in the door” to get future therapies.38,44, 38,44 Similar to people with MCI, carers also found it hard to trust clinicians due to lack of information or their concerns not being taken seriously.27,38,44 , 27,38,44 Carers described being “left alone” with the information, with one saying “the support in such a case, when you get such a diagnosis, would have to clearly better. . . I’ve been told too little”. 27

DISCUSSION

This is the first systematic review to explore the impact of a diagnosis of MCI on people and their carers’ wellbeing, everyday behaviors and healthcare utilization. Key findings indicate that diagnosis of MCI negatively impacted the wellbeing of both, in part, due to a limited understanding of the diagnosis and worries about future prognosis. Changes in everyday behavior were variable for individuals with MCI but centered around aspects of physical activity, hobbies and social activities. Carers appeared to have a more consistent pattern of changes in everyday behaviors, due to increased caring responsibilities and greater social isolation. Both individuals with MCI and carers expressed limited trust in clinicians due to what they regarded as ineffective communication around diagnosis and prognosis of thecondition.

Key findings suggest that the diagnosis of MCI had a negative impact on wellbeing for both individuals and carers. Significantly, people with MCI feel a sense of being devalued similar to other chronic conditions,52 –54 as they struggle with the diagnostic “label”,27,40, 27,40 similar to those with epilepsy becoming ‘epileptics’, and those with Alzheimer’s disease becoming ‘Alzheimer’s patients’. 55 Lack of understanding of the MCI diagnosis exacerbated this “labelling” of one’s self, with positive reactions only exhibited by those who had adequate information and support in one study. 33 We found that fear of the prognosis— the potential to develop Alzheimer’s or dementia— had a significant impact on wellbeing. A survey of neurologists, psychiatrists, neuropsychologists and geriatricians across multiple European countries suggested that 69% of participants discussed risk of dementia more generally, but less than 40% actually provided numeric estimates of risk. 56 In a Danish survey study, 44% of specialist physicians reported never or very rarely sharing information about the probability of disease progression with their patients. 57 This suggests that more detailed communication may be required to support wellbeing following diagnosis. Given that only 10–15% of people transition from MCI to dementia, 58 there is a clear need for the provision of information at the point of MCI diagnosis to clarify the potential prognostic pathway.

This review also highlighted carers’ frustration and depression following their care recipient’s diagnosis due to changes in their relationship dynamics and identity,37,38,41 , 37,38,41 a common experience also reported by carers of people with dementia.59,60, 59,60 These feelings appear to be universal for those affected by cognitive impairment and support provided to dementia carers may be useful and beneficial for MCI carers too. For example, dementia carers often reported a loss of independence and autonomy as their priorities focus on their care recipient, and the provision of adequate social support has been linked with decreasing their frustration. 61 Protecting the wellbeing of the carer is vital for ensuring optimal care of the person with cognitive impairment, as better carer wellbeing has been associated with better quality care and wellbeing of care recipients with dementia.62 –64 Psychosocial support following a MCI diagnosis should be offered to carers as the care recipient’s condition progresses. 65

Our review findings suggest that individuals with MCI diagnosis may either alter their lifestyle in an attempt to delay progression or make no change to their everyday behaviors. The method and content of communication from healthcare professionals regarding the MCI diagnosis and prognosis may mediate these responses. A survey of European clinicians suggested that less than 50% routinely discuss lifestyle changes with their patients; these changes could help support risk reduction of dementia, thus more knowledge provision is required. 56 Significant changes in everyday behaviors were reported in carers due to social withdrawal and increased caregiving responsibilities, similar to carers of people with dementia. 66 Caregiving for people with MCI is complex, as care recipients may lack insight into their own condition and engage in unsafe behaviors, such as cooking 41 and driving38,41, 38,41 requiring heightened vigilance from the carer.67,68, 67,68 Carers highlighted the need for more support but felt MCI was not a severe enough condition to warrant it.37,42,66 , 37,42,66. Dyadic support to maintain everyday behaviors may be beneficial following MCI diagnosis.

The main concern exhibited by both people with MCI and their carers was a lack of trust of clinicians due to delays in diagnosis and unclear information regarding diagnosis and prognosis.27,33–35,37,40 , 27,33–35,37,40 MCI has been described as more of a prognosis than a diagnosis within the literature, and can be more difficult for clinicians to convey and for people with MCI and their carers to understand.27,42,44 , 27,42,44 Carers took it upon themselves to research the condition, which may have contributed to increased stress. These findings highlight the vital role clinicians play during the diagnostic process and the need for a trusted point of contact for the dyad to obtain information and navigate concerns. 69

Key considerations

While the concept of MCI was originally developed for research purposes, clinical use is increasing. 70 A survey of European clinicians highlighted how 80% of participants found usage of the MCI label helpful with the processes of care planning and risk reduction; 56 findings were similar amongst American neurologists. 71 However, this review has evidenced two major considerations for the provision of an MCI diagnosis to patients, so as to ensure wellbeing, support everyday behaviors and maintain their trust with healthcare professionals.

Communication is key: We need better ways of communicating the diagnosis and prognosis to people with MCI and their families. An MCI diagnosis may encourage patients to make lifestyle changes associated with dementia prevention, but only if they have a reasonable understanding of the terminology and prognosis.

Need for support services: There is a clear need for support services for both groups to prevent worsening wellbeing. Dyadic support services should be provided at the point of diagnosis, including psychosocial counselling. This coincides with the consensus reached at the Manchester review, highlighting the need for clear clinical guidance on the management of MCI. 70 As evidenced in this paper, a diagnosis of MCI affects not only the person receiving it, but also the family members that assume the role of carers once that diagnosis has been received.

Strengths and limitations

This review used a comprehensive search strategy, multiple databases and an independent systematic screening approach. Our quality assessment suggests that most studies were moderate to good quality. However, due to resource limitations we only included papers written in English. Our review included papers over the last 19 years (when the term and concept of MCI was introduced 29 and first consortium on MCI was conducted 47 ); however, there could potentially be useful studies prior to this date that were not included. This systematic review only included qualitative research studies to address our research aim; a small number of papers were identified, likely due to the notable sparsity of qualitative explorations in healthcare settings. 72 Future work should consider synthesizing the results of quantitative research in these areas to complement the findings from this review, which would contribute to a more holistic understanding of the area. There are also some limitations within the papers included themselves. Five included studies did not specify the diagnostic criteria used to identify people with MCI.27,33,35,40,43 , 27,33,35,40,43 Only seven studies reported meeting data saturation; it is therefore unclear whether sufficient data was obtained in the other qualitative studies to support the conclusions drawn. There was limited longitudinal data, so changes in any perspectives over time were not explored. 37

Conclusion

The diagnosis of MCI affects the everyday behavior, wellbeing and healthcare utilization of people with the condition and their carers. As we continue to research and promote early diagnosis of dementia-causing diseases, patients’ and carers’ perspectives must be considered. The diagnosis should be clear and address any concerns that either population group have regarding cognitive decline, and prognostic concerns should be navigated appropriately. For both people with MCI and their carers, adequate personalized psychosocial support should be provided to reduce deterioration in wellbeing.

AUTHOR CONTRIBUTIONS

Sarah P. Slight (Conceptualization; Funding acquisition; Methodology; Supervision; Writing – review & editing); Evie Margaret Connolly (Data curation; Formal analysis; Methodology; Writing – original draft; Writing – review & editing); Riona Mc Ardle (Conceptualization; Data curation; Formal analysis; Methodology; Supervision; Writing – review & editing); Kweku Andrew Ampadu Bimpong (Data curation; Methodology; Validation; Writing – review & editing).

Footnotes

ACKNOWLEDGMENTS

The authors have no acknowledgements to report.

FUNDING

Ríona Mc Ardle is funded by the National Institute for Health and Care Research (NIHR) for her fellowship (NIHR 301677) and supported by the NIHR Newcastle Biomedical Research Centre (BRC) based at The Newcastle upon Tyne Hospital National Health Service (NHS) Foundation Trust; Newcastle University; and the Cumbria, Northumberland and Tyne and Wear (CNTW) NHS Foundation Trust

CONFLICT OF INTEREST

The authors have no conflict of interest to report.

DATA AVAILABILITY

Data sharing is not applicable to this article as no datasets were generated or analyzed during this study.

The supplementary material is available in the electronic version of this article: .

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