keith rn dementia case study

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• Kavanagh, J.M., Sharpnack, P.A., (January 31, 2021) “Crisis in Competency: A Defining Moment in Nursing Education” OJIN: The Online Journal of Issues in Nursing Vol. 26, No. 1, Manuscript 2.
• Nielsen, A., Gonzalez, L., Jessee, M. A., Monagle, J., Dickison, P., & Lasater, K. (2022). Current Practices for Teaching Clinical Judgment: Results From a National Survey. Nurse educator , 10.1097/NNE.0000000000001268. Advance online publication. https://doi.org/10.1097/NNE.0000000000001268
• McLean, S. (2016). Case-based learning and its application in medical and health-care fields: A review of worldwide literature. Journal of Medical Education and Curricular Development , 39. doi: 10.4137/JMECD.S20377

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Dementia case study with questions and answers

Dementia case study with questions and answers

Common dementia exam questions for medical finals, OSCEs and MRCP PACES

The case below illustrates the key features in the assessment of a patient with dementia or undiagnosed memory decline. It works through history, examination and investigations – click on the plus symbols to see the answers to each question

Part 1: Mavis

• Mavis is an 84-year old lady, referred to you in the memory clinic for assessment of memory impairment. She attends in the company of her son and daughter-in-law.
• On the pre-clinic questionnaire her son has reported a severe deterioration in all aspects of her cognition over the past 12 months.
• The patient herself acknowledges that there have been memory problems, but feels it is just her short term memory that is an issue.

Question 1.

• To begin the history, start broadly. Build rapport and establish both the patient’s view on memory impairment (if any) and the family’s (or other collateral history).
• Patient’s (and collateral) view of memory decline
• Biographical history
• Objective view of memory decline (e.g. knowledge of current affairs)
• Impact of memory decline on day-to-day living and hobbies
• Social history, including safety and driving
• General medical history (especially medications)
• See below for details on these…

Question 2.

• Is it for everything or are specific details missed out/glossed over?
• Try to pin down specific details (e.g. names of people/places).
• At what time in chronological order do things start to get hazy?

Question 3.

• If under 12 years this will lead to additional point being awarded on some cognitive tests
• Ask about long term memories, e.g. wedding day or different jobs
• Then move on to more recent memories, e.g. last holiday

Question 4.

• If your patient watches the news/read newspapers on a regular basis, ask them to recount the headlines from the past few days.
• Be sure to look for specifics to prevent your patient masking memory deficiencies with broad statements. For example: “The government are incompetent, aren’t they?!” should be clarified by pinning down exactly why they are incompetent, for example: “Jeremy Hunt”.
• If they like to read, can they recall plotlines from current books or items from magazines?
• If they watch TV, can they recount recent plot lines from soaps, or formats of quiz shows?

Question 5.

• Ask about hobbies and other daily activities, and whether or not these have declined recently.
• If your patient no longer participates in a particular hobby, find out why: is it as a result of a physical impairment (e.g. arthritis making cooking difficult), or as the result of a loss of interest/ability to complete tasks (e.g. no longer able to complete crosswords/puzzles).
• Once you have a good idea of the memory decline itself, begin to ask about other features. Including a social and general medical history.

Question 6.

• Review their social history and current set-up, and also subjective assessments from both patient and family over whether or not the current arrangements are safe and sustainable as they are.
• Previous and ongoing alcohol intake
• Smoking history
• Still driving (and if so, how safe that is considered to be from collateral history)
• Who else is at home
• Any package of care
• Upstairs/downstairs living
• Meal arrangements (and whether weight is being sustained).
• Of all these issues, that of driving is perhaps one of the most important, as any ultimate diagnosis of dementia must be informed (by law) to both the DVLA and also the patient’s insurers. If you feel they are still safe to drive despite the diagnosis, you may be asked to provide a report to the DVLA to support this viewpoint.

Now perform a more generalised history, to include past medical history and – more importantly – a drug history.

Question 7.

• Oxybutynin, commonly used in primary care for overactive bladder (anticholinergic side effects)
• Also see how the medications are given (e.g. Dossett box)
• Are lots of full packets found around the house?

Part 2: The History

On taking a history you have found:

• Mavis was able to give a moderately detailed biographical history, but struggled with details extending as far back as the location of her wedding, and also her main jobs throughout her life.
• After prompting from her family, she was able to supply more information, but it was not always entirely accurate.
• Her main hobby was knitting, and it was noted that she had been able to successfully knit a bobble hat for her great-grand child as recently as last month, although it had taken her considerably longer to complete than it might have done a few years previously, and it was a comparatively basic design compared to what she has been able to create previously.
• She has a few children living in the area, who would frequently pop in with shopping, but there had been times when they arrived to find that she was packed and in her coat, stating that she was “just getting ready to go home again”.
• She had been helping occasionally with the school run, but then a couple of weekends ago she had called up one of her sons – just before she was due to drive over for Sunday lunch – and said that she could not remember how to drive to his house.
• Ever since then, they had confiscated her keys to make sure she couldn’t drive. Although she liked to read the paper every day, she could not recall any recent major news events.  Before proceeding to examine her, you note that the GP referral letter has stated that her dementia screen investigations have been completed.

Question 8.

• Raised WCC suggests infection as a cause of acute confusion
• Uraemia and other electrolyte disturbances can cause a persistent confusion.
• Again, to help rule out acute infection/inflammatory conditions
• Liver failure can cause hyperammonaemia, which can cause a persistent confusion.
• Hyper- or hypothyroidism can cause confusion.
• B12 deficiency is an easily missed and reversible cause of dementia.
• This looks for space occupying lesions/hydrocephalus which may cause confusion.
• This can also help to determine the degree of any vascular component of an ultimately diagnosed dementia.

Part 3: Examination

• With the exception of age-related involutional changes on the CT head (noted to have minimal white matter changes/small vessel disease), all the dementia screen bloods are reassuring.
• You next decide to perform a physical examination of Mavis.

Question 9.

• Important physical findings that are of particular relevance to dementia, are looking for other diseases that may have an effect on cognition.
• To look for evidence of stroke – unlikely in this case given the CT head
• Gait (shuffling) and limb movements (tremor, rigidity, bradykinesia)
• Affect is also important here and may also point to underlying depression
• Pay attention to vertical gaze palsy, as in the context of Parkinsonism this may represent a Parkinson plus condition (e.g. progressive supranuclear palsy).
• It is also useful to look at observations including blood pressure (may be overmedicated and at risk of falls from syncope) and postural blood pressure (again, may indicate overmedication but is also associated with Parkinson plus syndromes e.g. MSA)

Part 4: Cognitive Testing

• On examination she is alert and well, mobilising independently around the clinic waiting room area.  A neurological examination was normal throughout, and there were no other major pathologies found on a general examination.
• You now proceed to cognitive testing:

Question 10.

• Click here for details on the MOCA
• Click here for details on the MMSE
• Click here for details on the CLOX test

Part 5: Diagnosis

• Mavis scores 14/30 on a MOCA, losing marks throughout multiple domains of cognition.

Question 11.

• Given the progressive nature of symptoms described by the family, the impairment over multiple domains on cognitive testing, and the impact on daily living that this is starting to have (e.g. packing and getting ready to leave her own home, mistakenly believing she is somewhere else), coupled with the results from her dementia screen, this is most likely an Alzheimer’s type dementia .

Question 12.

• You should proceed by establishing whether or not Mavis would like to be given a formal diagnosis, and if so, explain the above.
• You should review her lying and standing BP and ECG, and – if these give no contraindications – suggest a trial of treatment with an acetylcholinesterase inhibitor, such as donepezil.
• It is important to note the potential side effects – the most distressing of which are related to issues of incontinence.
• If available, put her in touch with support groups
• Given the history of forgetting routes before even getting into the care, advise the patient that she should stop driving and that they need to inform the DVLA of this (for now, we will skip over the depravation of liberty issues that the premature confiscation of keys performed by the family has caused…)
• The GP should be informed of the new diagnosis, and if there are concerns over safety, review by social services for potential support should be arranged.
• Follow-up is advisable over the next few months to see whether the trial of treatment has been beneficial, and whether side effects have been well-tolerated.

Now click here to learn more about dementia

Perfect revision for medical students, finals, osces and mrcp paces, …or  click here to learn about the diagnosis and management of delirium.

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Components of case management in caring for patients with dementia: a mixed-methods study

Desirée jerez-barranco.

1 Faculty of Health Sciences, Department of Nursing (Spain), University of Málaga, C/Arquitecto Francisco Peñalosa, 3, Campus Universitario de Teatinos, 29071 Málaga, Spain

2 Andalusian Health Service, District Costa del Sol, Málaga, Spain

Laura Gutiérrez-Rodríguez

3 Institute of Biomedical Research in Malaga (IBIMA), Málaga, Spain

Juan Carlos Morilla-Herrera

4 Andalusian Health Service, District Málaga-Guadalhorce, Málaga, Spain

Magdalena Cuevas Fernandez-Gallego

Remedios rojano-perez, maría dolores camuñez-gomez, josé luis sanchez-del campo, silvia garcía-mayor, associated data.

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

Case management has shown improvements in some health outcomes for dementia patients and their families. However, despite its benefits the components of case management in order to provide effective patient and family care remain unknown at present. Thus, the aim of this study is to identify the specific components of case management in caring for patients with dementia and to determine the necessary intensity of its deployment to enhance outcomes for these patients and their caregivers.

Mixed-methods study with a qualitative phase to characterise forms of service provision, according to the case management components involved, followed by a quantitative phase to analyse the correlations between different patterns of service provision, adverse events in patients and caregiver overload. This study will be based on the variables described in the RANGE.COM register.

This research is expected to achieve a reproducible, evaluable set of interventions that can be modelled to optimise case management effectiveness for patients with dementia . Interactions between patients with dementia, their family caregivers and case management healthcare services, the components of these interactions and their association with the conditions of the individuals concerned are issues of great interest in the field of case management, which is constantly evolving.

In recent decades, population aging has increased in line with life expectancy, improvements in the quality and conditions of life and the falling birth rate. The proportion of the global elderly is projected to increase from 12 to 22%, creating a population of two billion men and women by 2050 [ 1 ]. In Spain, the National Institute of Statistics (INE) forecasts that the number of persons aged over 80 years will have increased by 260% by 2049 [ 2 ].

In Andalusia (southern Spain), the life expectancy of women was 84.9 years in 2019, while that of men was 79.6 years [ 3 ]. However, advanced age and chronic disease can provoke frailty and dependence [ 1 ] with the consequent risk of hospitalisation, institutionalisation and death [ 4 – 6 ]. The appearance of dementia is usually associated with aging. Its prolonged duration increases morbidity and mortality, reduces the quality of life of patients and their families, provokes many limitations and often creates dependency.

Pathologies causing significant cognitive impairment, such as dementia, have been identified as predictive factors of institutionalisation [ 7 ]. Thus, 40% of those admitted to nursing homes suffer from dementia. In Andalusia, an estimated 60,000 people suffer from Alzheimer's disease. Of these, 90% live with their families and 40% are totally dependent [ 8 ].

The morbidity and mortality attributed to dementia is increasing worldwide [ 3 , 9 – 13 ], and this tendency is expected to increase exponentially [ 3 , 14 ]. Moreover, the number of hospital admissions for persons with dementia may be ten times greater than that for persons of the same age without dementia [ 15 ].

In 2015, the total global cost of dementia was around $818 billion [ 16 ], with direct socio-health economic costs of $487 billion, equivalent to 0.65% of the global gross domestic product (GDP) [ 17 ]. In 2016, the average annual cost of treatment in Spain for a patient with dementia was €24,184 [ 18 – 20 ].

In the EU, 44.2% of persons aged over 65 years presented some form of disability requiring assistance [ 21 ]. In Andalusia, around 66% of dependents were aged over 65 years, these rates being highest in the provinces of Malaga and Seville [ 22 ].

This escalation of dependency is associated with an increased need for care, and it is the family environment, not the health system, that is the main provider. In Spain, the White Paper on Dependency [ 23 ] defines informal care as “the provision of health care to dependent persons by relatives, friends or others in the immediate social circle, who do not receive financial compensation for the help given”. Caregivers often dedicate a large part of their available time to the direct and indirect tasks involved, with no formal timetable, schedule or direct economic return for doing so, and very often lack the skills required to perform this function, despite the personal costs incurred. In total, the estimated costs for a person with dementia exceed €60,000 per year [ 24 ]. Nevertheless, informal care reduces public spending on health care by almost four times [ 25 ], and is equivalent to 1.73–4.90% of GDP [ 26 ].

Primary caregivers may present fatigue, insomnia, mood swings, anxiety, sadness, irritability or deteriorated social relationships, among other signs and symptoms related to the “overburdened caregiver” syndrome [ 27 , 28 ]. The patient’s degree of functional dependence and the behavioural alterations experienced are key factors in precipitating this overload, which can lead to the caregiver renouncing this responsibility, and to the patient’s institutionalisation [ 28 , 29 ].

Health systems, though well prepared to respond to acute situations, are being overwhelmed by chronic health problems [ 30 ]. The current failure to overcome this challenge is provoking avoidable hospitalisations, breakdowns in the continuity of care and adverse outcomes for patients [ 18 ]. In consequence, the clinical care of acute patients should be complemented with a model that also addresses the issues raised by the chronically sick, requiring comprehensive, continuous and diversified attention [ 31 ]. To achieve this, self-care, case management and primary care should be promoted and reinforced as the crucial elements of chronic care [ 19 ].

According to the Case Management Society of America, case management is “a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality cost-effective outcomes” [ 32 ]. It may improve home care and help increase service efficiency and effectiveness by boosting patients’ functional recovery, fostering access to professionals and resources, increasing patient and caregiver satisfaction, streamlining therapeutic regimens, reducing caregiver overload and optimising the use of services [ 33 ].

Case management may also improve outcomes at certain time points in patients with dementia: for example, it reduces the risk of institutionalisation in the first six and eighteen months of dementia, reduces agitation at eighteen months, reduces the number of days of hospital admissions in the first six and twelve months and reduces the burden on the caregiver in the first six months [ 34 ].

Despite these acknowledged benefits, there remains some uncertainty about the specific components of case management and the intensity with which they should be deployed to provide an effective response to dementia. Among other causative factors, this indefinition may be due to the complexity of the interventions performed. A complex intervention, whether therapeutic or preventive, comprises a large number of individual interacting elements, all of which are related to the patient, the organisation (for example, the duration and frequency of interventions) and/or the health care itself (such as the professionals involved and the healthcare context) [ 35 ]. However, while these elements may all be essential to proper functioning, it is difficult to isolate the “key ingredients” determining the effectiveness of the intervention. Indeed, the greater the difficulty in defining these key ingredients and how they are interrelated, the greater the probability of the intervention being complex and thus more difficult to reproduce for other contexts, patients or organisations [ 36 ].

To address these issues, Campbell et al. [ 37 ] developed a conceptual framework to establish guidelines for the correct development of randomised controlled studies aimed at defining and evaluating complex interventions.

Various studies have reported the positive effects of case management in the treatment of dementia [ 38 – 50 ], reduce the fatigue anxiety of caregivers [ 49 ], delay institutionalisation [ 46 ] and foster the uptake of community services [ 42 ].

Regarding the specific components of case management for patients with dementia, Backhouse et al. [ 51 ] identified five elements that are determinant to the effectiveness of an intervention: the characteristics of the case management nurses (CMN) involved, communication (among professionals and with their clients), the type of intervention, the resources available and the support network established (again, both for the professionals and for their clients). In related work, Verkade et al. [ 52 ] described the following essential components of case management in patients with dementia: information, support and advice, coordination of the care provided and, to a lesser extent, practical help. The main conclusion drawn by these authors was that case management for patients with dementia should assist both the patient and the underlying system of support.

The Andalusian Public Health System (SSPA) has been implementing case management since 2002, a service that is provided by almost 400 professionals, throughout the region. It is one of the pioneering services in Spain and its effectiveness has led many other areas to adopt this reference model [ 33 ]. The Andalusian system was originally designed to serve the homebound population, often subject to complex chronic disease. Nevertheless, the real capacity of the Andalusian model to respond to the needs of this population has yet to be clarified.

For these situations, a commonly-adopted approach in health service research is to generate registers of diseases or specific clinical situations. These have a long tradition in cancer research [ 53 ] and in many other areas, such as stroke [ 54 ], mental health [ 55 ] and cardiovascular disease, such as the ARIAM registry [ 56 ]. This type of record-based research has great potential for understanding health processes from a longitudinal perspective and for obtaining data under normal practice conditions.

In view of these considerations, our research group created the RANGE.COM multi-centre case management register in Andalusia in 2012 [ 57 ]. This register currently includes 1,065 patients, detailing the profile and immediate social context of every patient with multimorbidity who receives this service. At present, RANGE.COM covers part of the internationally standardised outcome criteria for elderly persons with frailty [ 58 ], together with some variables related to social and family determinants.

Evidence-based guidelines and recommendations have been published for most of the health problems underlying dementias and appropriate quality measures. However, the transfer into practice of this evidence has not been systematically investigated and there is uncertainty about the structures and processes that would support its implementation and, ultimately, enhance nursing outcomes for persons with dementia [ 59 ]. Furthermore, the studies that have been conducted to date present large variations in terms of the case management models and outcome criteria evaluated. Consequently, the results of effectiveness studies remain far from conclusive.

The present study, therefore, addresses the need to analyse the interactions of patients, families and the health services, to describe the components of these interactions and to determine their association with the status of the patient and family. In parallel, we intend to establish a synergy with the information obtained from the RANGE.COM register [ 57 ], opening up new options in response to the major research question guiding this study.

General aims

• To identify the components of case management in persons with dementia and in their primary caregivers, in order to characterise appropriate forms of service delivery.
• To analyse the correlations between different patterns of service provision, on the one hand, and the presence of adverse events in patients and of burden on family caregivers, on the other.

Specific aims

• To describe the sociodemographic and clinical characteristics (such as functionality and comorbidities) of patients with dementia and the characteristics of their caregivers (dedication to care, perceived burden) who receive case management in the home environment, within the portfolio of services provided by the Andalusian Public Health System.
• To identify common components and interventions used in practice by CMN.
• To describe the correlation between components / interventions deployed by CMN and the presence of adverse events in patients (mortality, falls, hospital admission, pressure ulcers and institutionalisation).
• To analyse the correlation between the components / interventions deployed by CMN and the burdens perceived by family caregivers of persons with dementia.

These study goals will be addressed by means of a sequential exploratory study of mixed methods in which a first qualitative phase will try to explore the practice patterns implemented by the CMN which it will guide a second quantitative phase. In the first phase it will be created a conceptualized analysis framework with which to study the data obtained. During quantitative phase, the case management results of the range registry will be investigated in relation to the content and distribution of the service components. Hence, the constructivist approach of qualitative methods, thus providing new perspectives and facilitating a better understanding of the characteristics, processes and results of case management for persons with dementia [ 60 ].

The study will be carried out in Málaga (Spain), where the primary care reference is the Málaga Health District. This city has 26 health centres, with 289 nurses, 319 family doctors and 23 CMN. Of the latter, 91.6% are accredited by the Andalusian Quality Agency and all have completed case management training.

Recruitment for the study will take place at all 26 health centres.

Participants

Patients recently diagnosed with dementia and their caregivers, referred for case management and willing to participate in the study.

CMN: Eight persons will be selected, in two groups of four, classified by years of experience.

Inclusion criterion for patients

Diagnosis of dementia for patients who are new users of the case management services portfolio in the Málaga Health District, not in a terminal situation and accompanied by a family caregiver.

Exclusion criterion for patients

Refusal of consent, either directly or through the caregiver.

Inclusion criterion for caregivers

Primary caregiver for the patient in question.

Exclusion criterion for caregivers

Incapacity to perform this function due to serious mental disorder, such as depression, bipolar affective disorder, schizophrenia, developmental disorders or dementia.

Data collection

Phase 1. qualitative study.

Qualitative, case study design, using participant observation combined with in-depth interviews. The results obtained from Phase 1 will identify the components of case management applied to patients with dementia and their caregivers, from observation of this process in the natural clinical context. This methodological approach will enable us to consider a specific context, with a well- defined organisation and social setting, i.e. the provision of home care for persons with dementia, and will facilitate the involvement of a limited number of participants through episodic observations. Moreover, this approach has been adopted in a previous study of case management components [ 61 ]. With this method, we can address specific phenomena to better understand the "hows" and "whys", without manipulating the participants’ normal way of life. Furthermore, relevant contextual factors may be revealed, despite the possible blurring of boundaries between the context and the phenomenon to be studied [ 62 ].

Qualitative sampling

In this study, the unit of analysis will be the CMN, selected by intentional qualitative sampling to achieve four groups with the following segmentation criteria: relevant experience of more or less than ten years, and the socioeconomic level of the health area considered (low or medium–low vs. medium–high or high). This approach allows us to take a multiple-case approach to identify intra- and inter-case analogies and similarities [ 62 ]. Eight health centres will be selected, according to their ranking in the average municipal gross income per 1,000 inhabitants (data provided by the Spanish Finance Ministry [ 63 ].

This process will result in the selection of three health centres in the upper quartile of average income, three in the central quartile and three in the lower quartile. In total, eight CMN will be selected for participant observation and in-depth interviews. All patients who meet the criteria for dementia and who receive or request case management services from these nurses will be included in the analysis.

Study design

To avoid the usual over-expansion of case studies, we will apply the recommendations of Yin et al. [ 64 ]. A temporal and spatial framework will be established for the observation conducted at each health centre, delimited by the activity (patients with dementia who receive or request case management) and the context (home care services). Accordingly, a contact interview will be scheduled between the researcher and the CMN, during a normal working day.

Patients with dementia will be identified by their physician, family nurse or social worker, and referred for coordination by the CMN. Subsequently, the observations will be made on a date agreed with the nurse.

The observation location will usually be the patient's home, although for those in initial GDS-FAST stages, the contact might be made at the health centre. Participant observation will take the form of interaction between researcher and informants, in the latter’s home ground, thus enabling data to be collected in a systematic and non-intrusive way [ 65 ]. The presence of the researcher is of decisive importance, but must not alter the normal functioning of the scene observed. The only modification to the scene will be this presence, and the researcher’s role will be strictly non-determining in the social action [ 66 ]. To ensure these requirements are met, the observer accompanying the CMN will be a nurse with primary healthcare experience. Therefore, the duration of the familiarisation phase will be minimal.

The participant observation may require several CMN visits until the case episode is considered closed. Resources created for this study include a field journal and a set of observation units, based on a prior review of the literature and on consultation with expert researchers in the field (case management professionals with at least five years’ practice and research experience). Additional units may also be added, if necessary, in the course of the observations. During the observations, formal semi-structured interviews will also be carried out between the CMN and the patients and caregivers. Informal interviews may also be held in the natural environment of the observation. Another potential element is the analysis of documents or records of interest (for example, notes taken by the CMN, exchanges of written information between the parties, protocols, guides and aids to decision making).

All observations and interviews will be recorded with a digital voice recorder, to be used exclusively for this study, with prior written authorisation from the patient, if capable, or otherwise from his/her representative. In addition, authorisation will be obtained from all persons being recorded while accompanying the study subject. Every observation will later be transcribed, as far as possible reflecting the whole tone and content of the recording. Field notes will be taken on aspects related to body and gestural language, the researchers’ reflections, descriptions of persons and contexts and other items considered of interest by the researchers in situ.

The transcription will be performed by members of the research team and stored using ATLAS.Ti 22 qualitative analysis software.

Qualitative analysis

The transcription documents, as well as the field notes will be carefully read to identify emerging themes and will form the basis for a deductive coding (code by list), incorporating the components detailed by Verkade et al. [ 52 ]. Additionally (as in-vivo coding), further components from outside this list may be added. The encoded fragments will then be refined, modified or even reconfigured, for subsequent categorisation. All non-encoded material will also be reviewed, and if it contains important discourse elements it will be encoded freely.

These actions will generate a list of codes, to be grouped into categories, subcategories and possible topics of analysis.

A second member of the research team will triangulate the encoded information and independently review the encoding performed. Any discrepancies will be resolved by consensus among the researchers.

The results obtained will then be converted into a catalogue of components that can be used to map each aspect of the case management applied.

The credibility and validity of the data will be ensured by applying the reliability criteria proposed by Lincoln and Guba [ 67 ]: credibility, transferrability, consistency and neutrality (confirmability).

Phase 2. Quantitative study

This phase will consist of an analytical cross-sectional observational study, addressing Study Aims 1, 3 and 4.

Study subjects: population and sample

The study sample will consist of 157 CMN and 186 patients with dementia included in the Andalusian Register of patients undergoing follow-up by case management (RANGE.COM) [ 57 ] plus those who are currently in follow-up or who enter as new cases. Subsequently, post hoc statistical power estimations will be carried out. This register currently describes 1,065 patients, throughout Andalusia, being followed up by case managers. Any CMN who has no cases with dementia will be excluded from the analysis, although there is little probability of this occurring, due to the high frequency with which these patients occupy the provision of case management attention.

Data compilation

First, we will analyse the variables characterising the patients with dementia who are recorded in the RANGE.COM register at the time of the study, in terms of sociodemographics (age, sex, education, cohabitation) and clinical status (functionality, cognitive impairment, comorbidities). We will also address the variables corresponding to the caregivers (age, sex, education, daily dedication to care and burden).

Subsequently, using the case management components of dementias identified in the qualitative phase, a data collection form will be developed addressing the individual components, so that an email invitation may be sent to each of the RANGE.COM registered nurses (listed in this information registry), asking them to select the components that best describe their daily professional practice in patients with dementia. Each component will be self-assessed in order of the frequency with which it is applied in daily practice, scored on a Likert scale ranging from 1 to 5 (1 = I never perform this intervention for any patient or family caregiver; 5 = I perform this intervention regularly for all patients and/or family caregivers).

In addition, the nurses will be asked to provide sociodemographic data (age, sex) and details for professional characterisation (years of total experience, years of experience in case management, academic level achieved and self-perceived level of competence, using the Advanced Practice Nurses Competency Assesment Instrument [APNCAI] for the evaluation of competencies in advanced practice nurses validated by our research group) [ 68 ].

These components will then be analysed to generate groupings from which patterns of differential practices can be identified.

Quantitative analysis

Descriptive statistics will be obtained, with measures of central tendency, dispersion and the distribution of percentages for the variables characterising the participant nurses and patients. The normality of the distributions will be checked using the Kolmogorov–Smirnov test. Bivariate analyses will be carried out according to this normality or otherwise and the nature of the variables compared, using Pearson’s or Spearman's correlation, the chi-square test, Student's t test or Manuscript-Whitney's U test and ANOVA (after verification of homoscedasticity with the Levene test), applying the Brown-Forsythe and Games-Howell test in cases of heteroscedasticity, and the Kruskall-Wallis test otherwise.

A k-means cluster analysis will be carried out to identify groupings of CMN profiles according to the distances observed between the centroids of the variables generated by the components of the qualitative phase. This analysis will take an exploratory approach, seeking, a priori, to identify 3–4 clusters from which the one deemed most plausible will then be selected. An ANOVA will be performed on the cluster assigned to each CMN to identify associations between practices and outcomes (numbers of readmissions, acute hospitalisations, situations of caregiver overload, falls and visits to healthcare providers – General practitioner [GP], family nurse, social worker, hospital specialist). A chi-square test will also be performed to determine the relationship between the membership cluster and institutionalisation. Finally, a multivariate analysis will be made of outcomes such as institutionalisation, falls, hospital admissions and caregiver overload, using multiple linear regression with hierarchical methods, and incorporating the CMN as a second level of fitting (incorporated within the corresponding cluster). The first level will incorporate the patient’s age, sex and level of comorbidity, together with variables presenting a relevant association in the prior bivariate analyses, in order to detect possible confounders .

The results of this study will provide information as to which case management models and interventions are most effective in achieving results beneficial for the health of persons with dementia and for their caregivers, thus reducing the risks of institutionalisation and caregiver overload. The results obtained from this research are expected to be transferable through consensus documents, enabling us to compare and contrast modes of case management practice and to differentiate the results achieved. Foreseeably, these findings could guide recommendations to combine effective intervention packages, although they will need to be examined against other, solid research findings in order to make final recommendations on clinical practice guidelines for healthcare systems. The research results are expected to be widely applicable and will facilitate improvements to routine clinical practice in the Andalusian Public Health System in the following areas:

• Characterise the case management models used in Andalusia for patients with dementia.
• Determine the most effective case management practices and those most benefiting patients’ health and caregivers’ wellbeing.
• Reduce the risk of institutionalisation of persons with dementia.
• Improve the management of personal and family health.
• Reduce the burden on caregivers and healthcare services.
• Increase patient and caregiver satisfaction.

Studies conducted in Andalusia have shown that case management improves home care for patients and increases service efficiency and effectiveness by enhancing the functional recovery of patients, facilitating access to professionals and resources, improving patient and caregiver satisfaction, contributing to the management of treatment regimens and reducing caregiver overload and the use of services [ 33 ]. Moreover, various systematic reviews have reported that case management benefits both patients and caregivers, although further research is needed to determine the optimal extent and characteristics of the programme applied [ 69 , 70 ]. At the global level, results in this field are uneven, probably due to variability in case management practices [ 71 – 76 ].

It has been estimated that by 2030 some 156,000 people will be affected by dementia in Andalusia [ 77 ]. Therefore, the research findings we expect to obtain will be applicable to large numbers of patients and their caregivers, both in this region and elsewhere [ 1 ].

Limitations

In any given study, the value of clinical practice models to study their association with the results achieved, using a retrospective database, may be affected by changes in the professional practices during the period considered or by fluctuations in the characteristics of the professionals who provide the service. However, case management is well established in the Andalusian Public Health System and no major modifications are foreseen in this regard, although the possible influence of the contingencies mentioned will be monitored throughout the study.

Acknowledgements

Not applicable.

Abbreviations

Authors’ contributions.

DSJ: Investigation, Writing—Original Draft, Writing—Review & Editing, Visualization. LGR: Investigation, Writing—Original Draft, Writing—Review & Editing, Visualization. JCMH: Conceptualization, Methodology, Funding acquisition, Project administration, Investigation, Writing—Original Draft, Supervision. MCFG: Investigation, Methodology, Writing—Original Draft, Writing—Review & Editing, Visualization. RRP: Methodology, Writing—Review & Editing, Visualization. MDCG: Writing—Review & Editing, Visualization. JLSC: Writing—Review & Editing, Visualization. SGM: Methodology, Funding acquisition, Project administration, Writing—Original Draft, Writing—Review & Editing, Visualization. ALL: All authors have read and approved the manuscript.

This work was supported within the study AP-0245–2020 of the call for research and innovation projects in the field of primary care of the Andalusian Health Service (SAS) 2019, funded by the Progress and Health Andalusian Public Foundation (Fundación Progreso y Salud). This public entity in addition to providing us with the funding, they are the ones responsible for managing it.

Availability of data and materials

Declarations.

On 31 January 2019, the Research Ethics Committee of the Province of Málaga certified this project to be ethically and methodologically correct.

The study will be carried out in full accordance with the ethical principles established for research in the Declaration of Helsinki and its subsequent revisions.

The confidentiality of the information will be maintained at all times in accordance with the provisions of Spanish legislation, namely Organic Law 3/2018, of 5 December, on the Protection of Personal Data and Guarantee of Digital Rights, Law 41/2002 of 14 November on the Autonomy of the Patient and Rights and Obligations regarding Information and Clinical Documentation, and EU Regulation 2016/679 on General Data Protection.

Informed consent forms will be kept in files maintained and protected by the researchers and a copy will be provided to each patient. In addition, respondents will be given an information sheet stating the characteristics of the study, its purpose and what their participation entails, as a complement to the verbal information provided.

The documentation generated in this study will be duly stored in the custody of the principal investigator and will not be accessible to persons outside the research team or competent authorities. The documents generated in this study will be archived for at least five years. There will be no transfer of records to third parties without proper authorisation.

The authors and members of the research team declare that they have no ethical conflicts of interest regarding this study.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Case study 2: Bob and Edith

Download the Full Case Study for Bob and Edith PDF file (64KB)

Download the Vignette for Bob PDF file (56KB)

Name: Robert (Bob) Woodgate

Gender: Male

Ethnicity: White British

Religion: C of E

Disability: Alzheimer’s; hearing impairment; arthritis

First language: English

Family: extended family

Location: East Midlands town

Name: Edith

Gender: Female

Disability: vascular dementia; visual impairment; angina; diabetes

Extended family: Daughter – Cathy, 64, works as a manager in a high street shop, lives 80 miles away; married to Dave; son Daniel 38, married to Rachel with 2 children Archie 5 and Hope 3 Son – Gary 59, works in a distribution centre in the same town as his parents, partner is Mark, no children Daughter – Louise, would have been 62, died aged 46 of breast cancer, leaving a husband Keith aged 58, a retired police officer in a nearby town, who has married again to Sue; Louise and Keith had a daughter Lucy who is 36 and unmarried; Keith and Sue have a son Eric 30 and a daughter Christine 28

Bob and Edith have been married for 65 years. They live in a small bungalow that they moved to 3 years ago in the town that they have lived in since they got married. Bob and Edith have been retired for a long while. They enjoy spending time in the garden and go to the local pub quiz. Bob and Edith see their son and his partner most weeks. Gary does the heavy shopping for them. Cathy visits every month or so. Their middle child, Louise, died of breast cancer at the age of 46. The grandchildren also visit every few months, along with the two great grandchildren. Bob was diagnosed with Alzheimer’s disease 6 years ago and this has gradually affected his memory and ability to do daily tasks. For the last year he has relied on Edith to remind him and prompt him for everything. He doesn’t sleep well and has started to forget who Edith is. Bob has been attending the memory clinic and also a group called singing for the brain. Bob has arthritis and uses a stick when he remembers to. He is in quite a lot of pain which he doesn’t understand. He also has a hearing aid. Edith was diagnosed with vascular dementia a few months ago when Gary became concerned about her mixing up household tasks, for example putting shopping in the oven. Edith has glaucoma which is treated with eye drops daily. She also takes medication for angina and diabetes. Recently she has forgotten to do this some days. Gary has rung social services and asked for an assessment for his parents. He is worried about their ability to look after each other, and is upset that Bob has recently been asking when Louise (their deceased daughter) is going to visit and this has been upsetting Edith. You go out to do an assessment of Bob and Edith. Bob has a needs assessment.

Extended family:

Daughter – Cathy, 64, works as a manager in a high street shop, lives 80 miles away; married to Dave; son Daniel 38, married to Rachel with 2 children Archie 5 and Hope 3

Son – Gary 59, works in a distribution centre in the same town as his parents, partner is Mark, no children

Daughter – Louise, would have been 62, died aged 46 of breast cancer, leaving a husband Keith aged 58, a retired police officer in a nearby town, who has married again to Sue; Louise and Keith had a daughter Lucy who is 36 and unmarried; Keith and Sue have a son Eric 30 and a daughter Christine 28

Bob and Edith have been married for 65 years. They live in a small bungalow that they moved to 3 years ago in the town that they have lived in since they got married. Bob and Edith have been retired for a long while. They enjoy spending time in the garden and go to the local pub quiz. Bob and Edith see their son and his partner most weeks. Gary does the heavy shopping for them. Cathy visits every month or so. Their middle child, Louise, died of breast cancer at the age of 46.

The grandchildren also visit every few months, along with the two great grandchildren.

Bob was diagnosed with Alzheimer’s disease 6 years ago and this has gradually affected his memory and ability to do daily tasks. For the last year he has relied on Edith to remind him and prompt him for everything. He doesn’t sleep well and has started to forget who Edith is. Bob has been attending the memory clinic and also a group called singing for the brain. Bob has arthritis and uses a stick when he remembers to. He is in quite a lot of pain which he doesn’t understand. He also has a hearing aid.

Edith was diagnosed with vascular dementia a few months ago when Gary became concerned about her mixing up household tasks, for example putting shopping in the oven. Edith has glaucoma which is treated with eye drops daily. She also takes medication for angina and diabetes. Recently she has forgotten to do this some days.

Gary has rung social services and asked for an assessment for his parents. He is worried about their ability to look after each other, and is upset that Bob has recently been asking when Louise (their deceased daughter) is going to visit and this has been upsetting Edith.

You go out to do an assessment of Bob and Edith. Edith has both a needs assessment and a carer’s assessment, which are combined into one assessment for her.

Download the Ecogram for Edith and Bob PDF file (53KB)

This assessment was done at the same time as an assessment with Bob’s wife, Edith. A lot of the information came from Edith. Bob was able to tell me and show me some of the things that are important to him.

What’s important to you?

I spent some time with Bob and he showed me the garden. He likes to spend time there when it is fine and to sit at the window watching the birds on rainy days. Bob and Edith told me that he has always done the heavy work in the garden and that he enjoys keeping things in order. Bob said that he likes to listen to the radio. He mostly listens to radio 3. Bob also likes to watch the grand prix and cricket. Bob showed me photographs of his children, grandchildren and great-grandchildren. Edith explained that their son Gary and his partner Mark live nearby and they visit most weeks. And that they see their daughter Cathy every month, and the grandchildren and great-grandchildren every few months. Edith also explained that their younger daughter Louise died sixteen years ago. Bob evidently thinks Louise is still alive because he asked Edith when Louise was going to visit. Edith said that Bob sometimes doesn’t recognise her or other members of the family.

What’s happening for you at the moment?

Bob said that he looks after himself and helps Edith around the house and in the garden. Edith explained that Bob has had Alzheimer’s for six years and for the last year Edith has needed to remind him about what he needs to do and when, and prompt him when he forgets again. I noticed that the electric mower was out in the garden in the rain. Edith said that she is worried that she can’t see if things aren’t clean and put away. Edith has just been diagnosed with vascular dementia and also has glaucoma, diabetes and angina. Her son Gary told her recently that she had put the shopping in the oven instead of the fridge, and he noticed her using a pan that hadn’t been washed. Edith explained that Bob needs a lot of attention. He gets up in the middle of the night and Edith has to try to get him back to bed when he thinks it’s breakfast time. Edith has to watch him all the time. Bob also tends to follow Edith around the house. Bob said that his leg hurts. Edith told me that Bob has quite a lot of pain from arthritis and Edith doesn’t know what to do about this. Edith and Bob used to go out including to the pub quiz. Edith said that recently Bob has shouted and sworn at the quiz master and so they haven’t been since. Bob does go to memory group and singing for the brain every week. Bob said he likes to sing.

What is the impact on you?

Bob said that he is worried about not being able to get the ladder out to prune the trees. Also that Edith was getting older and needed some help. Edith explained that the things she is worried about are: Bob getting up in the night; who would get help if she had a mini stroke; how long she will be able to support Bob and keep things going in the house.

What would you like to happen in the future?

Bob was not able to tell me what he would like to happen in the future. He wants to keep doing his jobs in the garden, seeing his family and spending time with Edith.

How might we achieve this?

Bob said that Gary and his friend (Mark) could help with the ladder. (Gary agreed that would be fine). Bob said that Edith could do with some help in the house and with the cooking.

What strengths and support networks do you have to help you?

Edith and Bob have been married for 65 years. Edith supports Bob every day. Their son Gary and his partner, and daughter Cathy also provide support. Bob and Edith made the decision to move to their bungalow three years ago and this continues to help them to manage. Bob has good support from memory clinic and singing for the brain, which in turn helps Edith.

Social care assessor conclusion

Bob needs support to manage day to day tasks. This is currently provided by Edith, who in turn needs support to continue as a carer and because she has needs of her own. With some support from the local authority and other services, as well as from their family, Bob and Edith will be able to manage well at home. This is set out in the care and support plan for Bob, which should be read alongside the plan for Edith. We will review the care and support plans in six months. Edith’s family will help her to contact us if things change before then.

Eligibility decision

Bob is eligible for care and support. At the moment, the support is provided by his family, especially his wife Edith.

What’s happening next

See care and support plan for Bob .

We have also done an assessment for Edith, and she has a care and support plan .

We have offered a carer’s assessment to Gary and he will consider this.

Edith told me that the most important thing in her life is Bob, her husband, being settled and looked after. Bob has had Alzheimer’s for six years and for the last year Edith says she has been his memory, reminding him about what he needs to do and when, and prompting him when he forgets again.

Edith wants to stay in her home with Bob for the rest of their lives. She has always looked after the home and wants to keep doing this, and to manage things herself as much as possible.

Edith feels lucky that she has her son Gary and his partner Mark nearby and they visit most weeks. And that she sees her daughter every month, and her grandchildren and great-grandchildren every few months. She doesn’t want to worry Gary or rely on him too much but she does like to see him and Mark whenever they can.

Edith has recently been diagnosed with vascular dementia. She had a series of mini strokes over the last year, including one where she had a fall and bruised her knee. Edith said she has started to forget important things like putting her eyedrops in and taking her medication for glaucoma, diabetes and angina. She’s found it more difficult to do the housework and washing. Gary brings the heavy shopping. Bob tries to help but he makes it more difficult as he isn’t able to finish things he has started.

Edith is worried that she can’t see if things aren’t clean and that the house is not in a good state. Gary told her recently that she had put the shopping in the oven instead of the fridge, and he noticed her using a pan that hadn’t been washed. Edith is still able to keep on top of the post but finds it difficult to read some of the letters.

Bob needs a lot of attention. He gets up in the middle of the night and Edith has to try to get him back to bed when he thinks it’s breakfast time. Edith has to watch him all the time. Bob also tends to follow Edith around the house; sometimes she feels he is checking up on her. He has quite a lot of pain and Edith doesn’t know what to do about this.

Bob has started not to recognise Edith and also has forgotten that their daughter Louise died. He keeps asking when she will visit.

Edith and Bob used to go out including to the pub quiz, but recently Bob has shouted and sworn at the quiz master and so they haven’t been since.

Edith told me that she is worried that she is not able to do things and that she sometimes feels useless. She has been keeping things going since her husband Bob became ill and is now finding it more difficult to do this.

Edith is very tired from having to keep an eye on Bob all the time. She is sometimes too tired to cook or ends up sleeping in the chair.

Edith is finding it very difficult that Bob is starting to forget his family and also events from their past together. She doesn’t know what to say to him about Louise.

Edith is worried that if she has a mini-stroke then she might fall over and not be able to get help and Bob wouldn’t know what to do.

Edith wants to stay at home with Bob. She wants to keep seeing her family but not feel that they are there to check how things are.

Bob goes to a memory group and singing for the brain. Edith would like him to be able to keep going and to do more things like this.

Edith wants to make sure she has her eyedrops and medication when she is supposed to so that she can keep going.

Edith wants to know that the house and the garden are in order, and to still enjoy her home. She wants to carry on spending time in the garden and feeding the birds.

Edith enjoys watching quiz shows and wants to be able to keep doing this.

Edith said that she needs some help with the house and garden. She would like someone who takes pride in their work. She wants to carry on doing the cooking. Edith will need an alarm in case she leaves the gas on or the tap on.

Gary has said he can come round every week with the shopping and put this away. He is also going to help Edith with the post.

Edith would like to carry on going to the pub quiz. Mark said he would go with her while Gary stayed with Bob. Gary will also take Bob out for a drive once a week.

Edith would like some way of remembering about her eyedrops and tablets.

Edith wonders is there is a way of getting help if she has a fall.

Edith would like to have some uninterrupted sleep but she doesn’t know how this could happen. She would like some advice about what to do when Bob forgets the family, asks about Louise or swears.

Edith has been a carer for Bob for quite a few years. She has managed this well. Edith is resourceful and has put in strategies to manage her dementia, for example using the calendar and having reminders around the house.

They have been married for 65 years and have a close family. Edith’s son Gary and his partner, and her daughter Cathy provide support. Edith gets a lot of pleasure from seeing her grandchildren and great grandchildren.

Edith and Bob made the decision to move to their bungalow three years ago and this continues to help them to manage.

Edith has a good social network from her quiz night and they provide emotional support to her.

Bob has good support from memory clinic and singing for the brain, which helps Edith.

Edith is both a carer and has needs for care and support of her own. Edith has a number of health problems, including a recent diagnosis of vascular dementia, which impact on her ability to manage day-to-day tasks. Edith wants to continue to manage her home and look after her husband, and needs some additional support to do this.

Edith has a good support network from her family and has a social network. Most of the support that she needs is for her husband. Edith also needs some support for herself.

In the future Edith may want additional support from the carers’ centre. She may also need more direct help with day to day tasks. We will review the care and support plan in six months. Edith’s family will help her to contact us if things change before then.

Edith is eligible for care and support, and for support as a carer. At the moment the only service she is having from the council is assistive technology, as her family are providing the other support.

See care and support plan for Edith .

We have also done an assessment for Bob, and he has a care and support plan .

Download the care and support plan document for Bob PDF file (233KB)

Download the care and support plan document for Edith PDF file (305KB)

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• Open access
• Published: 19 April 2024

A longitudinal cohort study on the use of health and care services by older adults living at home with/without dementia before and during the COVID-19 pandemic: the HUNT study

• Tanja Louise Ibsen 1 ,
• Bjørn Heine Strand 1 , 2 , 3 ,
• Sverre Bergh 1 , 4 ,
• Gill Livingston 5 , 6 ,
• Hilde Lurås 7 , 8 ,
• Svenn-Erik Mamelund 9 ,
• Richard Oude Voshaar 10 ,
• Anne Marie Mork Rokstad 1 , 11 ,
• Pernille Thingstad 12 , 13 ,
• Debby Gerritsen 14 &
• Geir Selbæk 1 , 15 , 16  

BMC Health Services Research volume  24 , Article number:  485 ( 2024 ) Cite this article

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Metrics details

Older adults and people with dementia were anticipated to be particularly unable to use health and care services during the lockdown period following the COVID-19 pandemic. To better prepare for future pandemics, we aimed to investigate whether the use of health and care services changed during the pandemic and whether those at older ages and/or dementia experienced a higher degree of change than that observed by their counterparts.

Data from the Norwegian Trøndelag Health Study (HUNT4 70 + , 2017–2019) were linked to two national health registries that have individual-level data on the use of primary and specialist health and care services. A multilevel mixed-effects linear regression model was used to calculate changes in the use of services from 18 months before the lockdown, (12 March 2020) to 18 months after the lockdown.

The study sample included 10,607 participants, 54% were women and 11% had dementia. The mean age was 76 years (SD: 5.7, range: 68–102 years). A decrease in primary health and care service use, except for contact with general practitioners (GPs), was observed during the lockdown period for people with dementia ( p  < 0.001) and those aged ≥ 80 years without dementia ( p  = 0.006), compared to the 6-month period before the lockdown. The use of specialist health services decreased during the lockdown period for all groups ( p  ≤ 0.011), except for those aged < 80 years with dementia. Service use reached levels comparable to pre-pandemic data within one year after the lockdown.

Older adults experienced an immediate reduction in the use of health and care services, other than GP contacts, during the first wave of the COVID-19 pandemic. Within primary care services, people with dementia demonstrated a more pronounced reduction than that observed in people without dementia; otherwise, the variations related to age and dementia status were small. Both groups returned to services levels similar to those during the pre-pandemic period within one year after the lockdown. The increase in GP contacts may indicate a need to reallocate resources to primary health services during future pandemics.

Trial registration

The study is registered at ClinicalTrials.gov, with the identification number NCT 04792086.

Peer Review reports

In Norway, similar to most European countries [ 1 , 2 , 3 ], the first wave of the COVID-19 pandemic lasted from 12 March to 15 June 2020 [ 4 ]. During this period, strict infection control measures were introduced to minimise the number of infected people. Health and care services were reduced or locked down, because health professionals were transferred to COVID-19-related services, or hospital wards were reserved for COVID-19 patients. Facilities such as day care services were closed to prevent the spread of infection through social contact, and some services were employed with digital technology. People were urged to stay at home to maintain social distancing and prevent the spread of the virus [ 4 ].

The strict infection control measures aimed mainly to prevent people from hospitalisation and/or death by COVID-19. By 13 November 2022 (last published data), Norway recorded 4,399 cumulative COVID-19-related deaths, of which approximately two-thirds occurred in 2022 (in people of an average age of 85.6 years in 2022) [ 5 ]. From March 2020 to March 2021, compared to the mean all-cause mortality from 2016 to 2019 as a reference, Norway recorded significantly lower all-cause mortality than those recorded by other European Union countries [ 6 ], indicating that Norway had a successful public health strategy. The topic being raised in the present paper, is how infection control measures affected the use of health and care services by the older population, to better prepare ourselves for future health crisis like a pandemic.

Older adults are particularly vulnerable to COVID-19 and at a higher risk of hospitalisation and death [ 7 ]. People with dementia are anticipated to have an even higher risk of mortality than that of people without dementia, because of an impaired immune system [ 8 ]. Fearing the virus, some older adults personally imposed strict infection control measures and cancelled scheduled healthcare appointments. A German study, including participants aged ≥ 73 years, has reported that approximately 30% of the participants reduced or cancelled their medical consultations during the first wave of the pandemic [ 1 ]. A qualitative study including participants aged 65–79 years from Portugal, Brazil, and the United Kingdom has reported that the majority refrained from face-to-face contact with their family doctors in the first wave of the pandemic, as it implied using public transport making social distancing difficult [ 2 ]. Some health and care services have been replaced with online or telephone consultations, which have been beneficial for some parts of the population and challenging for others, especially older adults [ 2 , 3 , 9 ].

People with dementia often need health and care services and practical assistance in their homes to manage their everyday lives [ 10 ]. A Norwegian study including 105 caregivers of people with dementia has reported that 60% experienced a reduction or full cessation of formal care during the first wave of the pandemic as the services were cancelled by the service provider [ 11 ]. This is in line with studies from Sweden and the USA, which reported a significant drop in the use of health and care services during this period [ 12 , 13 ]. However, how the use of primary and specialist healthcare services affected older adults, including people with dementia, as society began a cautious reopening after the first wave of the pandemic remains unclear. A study from the USA conducted a predictive analysis for the post-lockdown period (June 2020–October 2021) on inpatient, outpatient, and emergency services. They found that people with mild cognitive impairment (MCI), Alzheimer’s disease, and related dementia experienced greater and more sustained disruptions in primary and specialist health and care service use than those experienced by people without MCI or dementia [ 13 ].

In the present study, we used a large population-based dataset from the Norwegian Trøndelag Health Study (HUNT) [ 14 ], linked to national registry data on primary and specialist health and care services, to investigate whether the use of health and care services changed during the pandemic, and those with older ages and/or dementia had a higher degree of change than that observed in their counterparts.

Study design and setting

We used a longitudinal cohort design, linking participant data on sex, year of birth, and cognitive status from the HUNT4 70 + survey with later registry data on the use of health and care services from 12 September 2018 to 11 September 2021. This time period equals 18 months before- and 18 months after the Norwegian lockdown on 12 March 2020. This 36-month period was grouped into six periods of six months each, including three pre-lockdown periods (pre1, pre2, and pre3), one lockdown period, and two post-lockdown periods (post1 and post2) (Fig.  1 ). We included a longer lockdown period than the generally denoted period from March to June 2020, as the reopening started slowly, and many older adults imposed strict social distancing on themselves. The next period, 12 September 2020 to 11 March 2021 also included periods with restrictions on social life and activity, such as a maximum of five people gathering and recommendations for wearing a face mask where maintaining distance is difficult. In the last period from 12 March to 11 September 2021, all infection control measures were gradually lifted until Norway was completely reopened on 25 September 2021 [ 4 ]. Trøndelag, the county where the study was conducted, followed national infection control regulations.

Flow-chart of the study periods

Participants

The study included participants aged > 70 years in the fourth wave of the HUNT Study (HUNT4 70 +), which took place between September 2017 and March 2019. The HUNT is a population-based study that has invited the entire adult population from the same geographic area, North-Trøndelag, in four waves, first time in 1984 [ 14 ]. As North-Trøndelag does not comprise any large cities, a random sample of people aged > 70 years from a city in Trondheim (212,000 inhabitants) was also invited. In total, 11,675 participants were included, with 9,930 from North-Trøndelag (response rate 51%) and 1,745 from Trondheim (response rate 34%). We do not judge that there is likely to be any systematic bias introduced by the difference in response rates in different municipalities as the people living at home are similar populations.”. The participants answered a questionnaire that included socio-demographic and clinical data, and they attended a comprehensive clinical evaluation by health professionals [ 15 ]. Participants without sufficient information on their cognitive status ( n  = 202) and nursing home residents ( n  = 866) were excluded (Fig.  2 ). The mean age (76 years, SD 5.7 years) of those included was lower than that of those excluded (82 years, SD 7.9) ( p  < 0.001). The study population included 10,607 participants with complete data on cognitive status. We do not have information on dementia status on the population not included in HUNT4 70 + .

Flow-chart of included participants. HUNT4 70 + : The fourth wave of the Trøndelag health study, 70 year and older cohort

Dementia diagnosis

Two specialists from a diagnostic workgroup of nine medical doctors with comprehensive scientific and clinical expertise (geriatrics, old-age psychiatry, or neurology) independently diagnosed each patient with dementia using the Diagnostic and Statistical Manual of Mental Disorders-5 [ 16 ]. Discrepancies were resolved and consensuses were obtained by the involvement of a third expert. During the diagnostic process, the experts had access to all relevant information from the HUNT4 70 + dataset, such as education, function in activities of daily living, neuropsychiatric symptoms, onset and course of cognitive symptoms, cognitive tests (the Montreal Cognitive Assessment (MoCA) scale [ 17 ] and the Word List Memory Task (WLMT) [ 18 ], and structured interviews with the closest family proxy. A more comprehensive description of the diagnostic process has been published [ 15 ].

Health and care services

Data from two national registries were collected for the entire study period, from September 2018 to September 2021. Health and care services used in primary health care were obtained from The Norwegian Registry of Primary Health Care [ 19 ]. This registry includes individual-level data on municipal health services (contacts with general practitioners (GPs), emergency rooms, and physiotherapists) and care services (care, such as home nurses, and practical assistance in the recipient’s home, day care, respite services and short-term nursing home stays, municipal housing, and nursing home admission) [ 20 ]. Information on the use of specialist health services was based on data from the Norwegian Patient Registry (NPR) [ 21 ]. The NPR holds individual-level data on patients’ use of specialist health services (contacts with somatic hospitals, mental health care, and rehabilitation institutions). The NPR also registers whether the contact was an outpatient consultation, hospitalisation, or day-treatment [ 20 ].

Data were analysed using the STATA 16 software [ 22 ]. Participant characteristics are reported as means with SD, frequencies, or percentages, as appropriate. Those who were admitted to a nursing home ( n  = 364) or died ( n  = 821) during the study period were censored and participated in only half of the person-time during the study period. Duplicates were removed (3,293 observations). The mean number of health and care services per person in each period (with 95% confidence interval [CI]) was predicted from a multilevel mixed-effects linear regression model with random intercept, where random effects varied across the individuals. In the regression model, the number of services per person was the outcome variable and sex, age, cognitive status (no dementia/dementia), and period were covariates.Age and cognitive status are relevant confounders to address the aim of the present study, and sex is included as a key sociodemographic measure in epidemiological research. [ 23 , 24 ]. To allow for different time trends by cognitive status group, the interaction term period by cognitive status was included in the regression model. In the predictions, the adjusted variables were fixed at their mean values. The significance level was set at p  < 0.05. To investigate the use of health and care services before and during the pandemic, the number of care services implemented within each period and the number of contacts within each period for primary and specialist health services were aggregated. Hence, for care services, we used the date on which the service was implemented, for example the date on which practical assistance at home was implemented. For health services, we used the date when the service occurred, for example, the date a person had contact with a GP or the date a person had contact with a hospital, either for outpatient consultation, hospitalisation, or day-treatment.

In the Results section, we report significant differences between the lockdown period and all the pre- and post-lockdown periods, and between pre2 and post2, as these periods comprise the same seasonal months, one year before and one year after the lockdown, respectively.

The study included 10,607 participants, of whom 54% were women, and 11% had dementia (Table  1 ). The mean age of the participants on 1 January 2017 was 76 years (SD 5.7, range: 68–102 years), and 7,769 participants (73%) were < 80 years old. During the 36-month follow-up period, the study sample was reduced by 10% (from 10,607 to 9,568) due to censoring for death and/or nursing home admission (Table  2 ). The dropout rate was higher in those with dementia than in those without dementia (37% vs. 7%, p  < 0.001). During these 36-months, the total number of contacts with primary health services was 554,061, which corresponded to 9.2 contacts per person per 6-month period (Table  3 ). People with dementia had more contact with health services in the municipality than the contact made by those without dementia (11.3 vs. 8.8 contacts per person per 6-month period, p  < 0.001). The total number of care services implemented for our study population was 20,411, which corresponded to 0.3 care services per person per 6-month period. People with dementia received more care services than those received by people without dementia (1.2 vs. 0.2 care services per person per 6-month period, p  < 0.001). The total number of contacts with specialist health services was 141,994, which corresponded to 2.3 contacts per person per 6-month period. People with dementia had less contact with specialist health services than the contact made by those without dementia (2.2 vs. 2.6 contacts per person per 6-month period, p  < 0.001).

Primary health and care services

Health services.

During the 36-month study period, contact with GPs was the most used health service (66%), followed by physiotherapy services (30%), and contact with GPs in emergency rooms (4%).

The following model only presents contact with GPs, including GPs in emergency rooms, as contact with GPs was the most frequently used primary health service.

The age- and sex-adjusted model (Fig.  3 ) shows that for those aged < 80 years with dementia, the mean number of GP contacts during the lockdown period was higher than that during pre1 (1.27, p  < 0.001) and pre3 (0.82, p  = 0.002) and lower than that during post1 (1.67, p  < 0.001) and post2 (0.84, p  < 0.002). The mean number of GP contacts during post2 was higher than that during pre2 (0.32, p  < 0.001).

Mean number of registered contacts with general practitioners (GPs) per period, pre-lockdown, during lockdown and post-lockdown, including GPs at emergency rooms, for participants < 80 versus ≥ 80 years, divided in people with- or without dementia. Mean number of contacts was predicted in a mixed-effects linear regression model adjusted by period, cognitive status, sex, age, and the interaction period*cognitive status. In the predictions, the adjustment variables age and sex were fixed at the mean values

For those without dementia, the mean number of GP contacts during the lockdown was higher than that during pre1 (0.45, p  < 0.001) and pre2 (0.51, p  < 0.001) and lower than that during post1 (1.18, p  < 0.001) and post2 (0.59, p  < 0.001). The mean number of GP contacts during post2 was higher than that during pre2 (1.11, p  < 0.001).

For those aged ≥ 80 years with dementia, the mean number of GP contacts during the lockdown was higher than that during pre1 (1.45, p  < 0.001) and pre2 (0.96, p  = 0.015) and lower than that during post1 (2.31, p  < 0.001). The mean number of GP contacts during post2 was higher than that during pre2 (1.72, p  < 0.001).

For those without dementia, the mean number of GP contacts during the lockdown was higher than that during pre1 (1.15, p  < 0.001) and pre2 (0.91, p  < 0.001) and lower than that during post1 (1.86, p  < 0.001) and post2 (0.60, p  < 0.002). The mean number of GP contacts during post2 was higher than that during pre2 (1.51, p  < 0.001).

Care services

During the 36-month study period, care and practical assistance at home represented the largest service group (69%), followed by short-term nursing home stays and respite services (21%), nursing home admissions (4%), municipal housing (3%), and day care services (4%). The following model presents all combined care services.

The age- and sex-adjusted model (Fig.  4 ) shows that for those aged < 80 years with dementia, the mean number of care services implemented during the lockdown was lower than that during pre3 (0.37, p  < 0.001) and post1 (0.43, p  < 0.001). The mean number of care services implemented in post2 was higher than that during pre2 (0.13, p  = 0.039).

Mean number of care services implemented per period, pre-lockdown, during lockdown and post-lockdown, as health care and practical assistance in the home, day- and respite services, short-term institutional stay, and nursing home admission, for participants < 80 versus ≥ 80 years, divided in people with- and without dementia. Mean number of care services implemented was predicted in a mixed-effects linear regression model adjusted by period, cognitive status, sex, age, and the interaction period*cognitive status. In the predictions, the adjustment variables age and sex were fixed at the mean values

For those without dementia, the mean number of care services implemented during the lockdown was higher than that during pre1 (0.5, p  = 0.001) and pre2 (0.04, p  = 0.005) and lower than that during post1 (0.03, p  = 0.044). The mean number of care services implemented during post2 was higher than that during pre2 (0.07, p  < 0.001).

For those aged ≥ 80 years with dementia, the mean number of care services implemented during the lockdown was lower than that during pre3 (0.76, p  < 0.001).

For those without dementia, the mean number of care services implemented during the lockdown was higher than that during pre1 (0.22, p  = 0.001) and pre2 (0.17, p  = 0.011) and lower than that during pre3 (0.18, p  = 0.006) and post1 (0.18, p  = 0.007). The mean number of care services implemented during post2 was higher than that during pre2 (0.24, p  < 0.001).

Specialist health services

During the study period, service provision from somatic hospitals was the most used service (96%), followed by mental health care (3%), and treatment at a rehabilitation institution (1%). Somatic hospital services included outpatient consultations (88%), hospitalisation (9%), and daily treatment (3%). The following model only presents contacts with somatic hospital services, as this is the most frequently used specialist health service.

The age- and sex-adjusted models (Fig.  5 ) show that for those aged < 80 years with dementia, the mean number of contacts with somatic hospital services during the lockdown was lower than that during post1 (0.67, p  = 0.002) and post2 (0.48, p  = 0.025). The mean number of contacts with somatic hospital services in post2 was higher than that during pre2 (0.61, p  = 0.004).

Mean number of registered contacts with somatic hospital services per period, pre-lockdown, during lockdown and post-lockdown, for participants < 80 versus ≥ 80 years, divided in people with- or without dementia. Mean number of contacts was predicted in a mixed-effects linear regression model adjusted by period, cognitive status, sex, age, and the interaction period*cognitive status. In the predictions, the adjustment variables age and sex were fixed at the mean values

For those without dementia, the mean number of contacts with somatic hospital services during the lockdown was lower than that during pre1 (0.16, p  = 0.002), pre3 (0.40, p  < 0.001), post1 (0.43, p  < 0.001), and post2 (0.34, p  < 0.001). The mean number of contacts with somatic hospital services in post2 was higher than that during pre2 (0.25, p  < 0.001).

For those aged ≥ 80 years with dementia, the mean number of contacts with somatic hospital services during the lockdown was lower than that during pre2 (0.54, p  = 0.003), pre3 (0.46, p  = 0.011), post1 (0.44, p  = 0.022), and post2 (0.42, p  = 0.040).

For those without dementia, the mean number of contacts with somatic hospital services during the lockdown was lower than that during pre3 (0.49, p  < 0.001), post1 (0.41, p  < 0.001), and post2 (0.41, p  < 0.001). The mean number of contacts with somatic hospital services in post2 was higher than that during pre2 (0.29, p  = 0.001).

This population-based study revealed that people with dementia experienced a larger decrease in the use of primary care services implemented during the lockdown than that experienced by people without dementia. Contact with GPs was maintained at a normal level or increased in both groups during the lockdown. The use of specialist health services decreased in both groups during the lockdown period except for those aged < 80 years with dementia. The use of primary health and care services, and specialist health services was at the same or higher-level post-lockdown (post2) as pre-lockdown (pre2). Collectively, these results indicate an increased burden on primary health services during the lockdown.

Both cognitive groups had a similar number of GP contacts during lockdown as pre-lockdown. Those aged < 80 years with dementia experienced an increased number of GP contacts during the lockdown compared to the numbers during the 6-month period before the lockdown (pre3). Furthermore, all the groups had an increased number of GP contacts in the first 6-months period post-lockdown (post1). Unfortunately, we were unable to identify whether the consultations were digital in our material; however, digital consultations may have contributed to maintaining contact with GPs during the pandemic. This corresponds with the results of a previous study which has reported that the Norwegian population experienced an increased use of telephone and video consultations during the pandemic [ 3 ]. However, a survey during the pandemic in the same study population as that of the present study (HUNT4 70 +) revealed that only 8% reported contact with healthcare professionals via screen-based media or telephone at least once a month during the pandemic [ 9 ]. In addition, a survey of video consultations among Norwegian GPs during the pandemic revealed that video consultations were unsuitable for the oldest population [ 25 ].

The results of the present study may indicate that GPs managed to serve older adults in Norway during the pandemic and that the cancellations of medical consultations described among older adults in other countries [ 1 , 2 ] have been less extensive in Norway. Meanwhile, contact with GPs may have shifted towards more severe cases, where patients in need of specialist health services who postponed contact because of COVID-19 used the primary care service. In addition, the increase in GP contact post-lockdown may imply an increased stress level among older adults and an increase in health problems during the lockdown, which will be discussed in more detail in a later section.

Our finding that people with dementia experienced a larger decrease in the number of care services implemented during the lockdown than that experienced by people without dementia is in line with those of earlier studies [ 11 , 13 ]. This is most likely a consequence of the fact that people with dementia use care services more often and thus, are more affected when such services are reduced or locked down. Interestingly, those with dementia in both age groups experienced a significant increase in new services implemented in the 6-month period before the lockdown (pre3). However, the possible cause for the increase in care services implemented, such as a reduction in other services or societal changes during this period, remains unconfirmed. The most likely explanation is an increase in service needs related to dementia progression, although some random fluctuations cannot be ruled out.

Care service providers have reported a deterioration in older adults’ health during the pandemic related to the absence of social support, which, in turn, has led to less support with meals, practical help, and physical activity [ 26 ]. Next of kin reported that people with dementia had a reduction in cognitive- and functional abilities because of the limited possibility of meaningful activities and mental stimulation when they had to stay at home [ 27 , 28 ]. Furthermore, a lack of social connections [ 29 ] and perceived social support [ 30 ] are associated with cognitive decline and depression. Based on these findings, it can be assumed that the need for care services may be the same or higher post-lockdown than that in the 6-month period before the pandemic (pre3). However, the number of care services implemented post-lockdown (post2) was at the same level as that at pre-lockdown (pre2).

This study revealed that somatic hospital services for those aged ≥ 80 years were the only services with a lower level of contact during the lockdown period than during the comparable pre-lockdown period (pre2). Both those with and without dementia had a decrease in somatic hospital services during the lockdown period, compared to the 6-months period before the lockdown. This corresponds with findings from an Italian study conducted in the autumn of 2020, reporting that hospitalisations and outpatient visits among older adults aged ≥ 65 years were reduced by 18.3% during the pandemic [ 31 ].

The decrease in the use of somatic hospital services during the lockdown observed in the present study was most likely related to strict infection control measures that prevented a widespread COVID-19 outbreak. Furthermore, it may be interpreted as a precautionary measure taken to minimize the risk of exposing older adults to hospitals, where a considerable number were affected by COVID-19. Hospital services experienced the greatest decline in activity during the lockdown due to preparedness for COVID-19 patients [ 32 ]. In the present study, all the groups returned to the same or a higher level of contact with somatic hospital services post-lockdown (post2), than they had pre-lockdown (pre2). Conversely, a study from the USA has suggested that people with dementia or MCI would experience more sustained disruption in primary and specialist health services than that experienced by people without such diagnoses [ 13 ]. Another study from the USA has revealed that those with comorbidities, often present among people with dementia, were at a higher risk of delayed or missed care during the pandemic [ 33 ]. The contrast in the findings may be related to differences in the healthcare system. In addition, the World Health Organization has reported disruptions in both primary and specialist health services worldwide two years into the pandemic. High-income countries reported fewer service disruptions than those reported by low-income ones [ 34 ]. The increase in GP contact post-lockdown in the present study may indicate that primary health services have been able to relieve specialist health services in Norway, so that people with dementia and others in need of specialist health services may be prioritised.

The variation in the frequency of contact with both somatic hospital services and GPs may be observed in the context of normal seasonal variations, where contact might be higher in the autumn and winter months (pre1, pre3, and post2) than in the spring and summer months (pre2, lockdown, and post2). However, the Norwegian Institute of Public Health has reported that the seasonal flu outbreak from December 2019 to March 2020, which corresponds with the 6-month period before the lockdown (pre3), was limited compared to those in previous years [ 35 ]. Thus, normal variations due to seasonal flu cannot provide a full explanation for more contact with GPs and somatic hospital services in the 6-month period before lockdown (pre3). The next seasonal flu, expected from December 2020 to March 2021 (post1), did not appear as expected, most likely because of the infection control measures in connection with the COVID-19 outbreak [ 36 , 37 ]. The increase in the frequency of contact with GPs and somatic hospital services detected in the 6-month period after the lockdown (post1) may be explained by the fact that people had less contact with these services for diseases other than COVID-19 during the first wave of the pandemic [ 32 ], and that these consultations accumulated when society started reopening. Furthermore, the increase in contact with GPs and somatic hospital services after the lockdown may be explained by the increased contact between people, which may have caused an increased spread of infections [ 37 ].

Finally, the increase in mental health problems during the pandemic [ 27 , 28 , 30 ], may have required additional medical supervision. Studies have reported an increase in depression among older adults during the pandemic, a related increase in the prescription of antidepressant medication [ 30 , 38 ], and the need for primary health services, such as GPs, and specialist services, such as hospital services [ 38 ].

Strength and limitations

The main strength of the present study is its large population-based survey sample merged with unique national registry data on primary and specialist health care services. This provided objective data regarding the participants’ service use. Despite the large study sample, all the participants were from the middle region of Norway, which may differ from the population in other parts of the country and outside Norway. Furthermore, the study sample was a homogenous group of participants mainly born in Norway, and the results cannot be generalised to other ethnic groups. Although the diagnostic process for dementia was thorough, the diagnosis was based on collected research data without access to imaging or biomarker data which may have caused misclassification. As our goal was to estimate the actual change in service use based on dementia status among younger and older adults, the analysis does not include health-related covariates such as comorbidity and functional level. Finally, the information on dementia status was collected from 2017 to 2019 and may have changed during the study period from September 2018 to September 2021.

The use of primary care and specialist health services was immediately reduced during the COVID-19 lockdown period. Within primary care services, people with dementia experienced a more pronounced reduction than that experienced by people without dementia; however, age and dementia status only demonstrated small variations. One year after the lockdown, service provisions returned to a level similar to or higher than that of one year before the lockdown for all groups. Our findings indicate that infection control and management limited the scope of action within care services and specialist health services during the lockdown, leaving GPs on the front line to manage medical problems and psychological stress in the population. In any future pandemic, the reallocation of resources for primary health services could make us better equipped to meet the needs of the population.

Availability of data and materials

The data that support the findings of this study are available from the HUNT database and the Norwegian registry database, Helsedata, but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of the HUNT database and the Norwegian registry database Helsedata.

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Acknowledgements

HUNT is a collaborative project between the HUNT Research Centre at the Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, the Trøndelag County Council, the Central Norway Regional Health Authority and the Norwegian Institute of Public Health. We would like to thank everyone who participated in HUNT 70+ for their valuable contributions to this research.

This study was supported by the Norwegian Health Association (grant no. 22687).

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Authors and affiliations.

The Norwegian National Centre for Ageing and Health (Ageing and Health), Vestfold Hospital Trust, Tønsberg, Norway

Tanja Louise Ibsen, Bjørn Heine Strand, Sverre Bergh, Anne Marie Mork Rokstad & Geir Selbæk

Department of Geriatric Medicine, Oslo University Hospital, Oslo, Norway

Bjørn Heine Strand

Department of Physical Health and Ageing, Norwegian Institute of Public Health, Oslo, Norway

Research Centre for Age-Related Functional Decline and Disease (AFS), Innlandet Hospital Trust, Ottestad, Norway

Sverre Bergh

Division of Psychiatry, University College London, London, UK

Gill Livingston

Camden and Islington NHS Foundation Trust, London, UK

Health Services Research Unit, Akershus University Hospital, Oslo, Norway

Hilde Lurås

Institute of Clinical Medicine, University of Oslo, Oslo, Norway

Centre for Research On Pandemics & Society (PANSOC), at Oslo Metropolitan University, Oslo, Norway

Svenn-Erik Mamelund

Department of Psychiatry, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands

Richard Oude Voshaar

Faculty of Health Sciences and Social Care, Molde University College, Molde, Norway

Anne Marie Mork Rokstad

Department of Neuromedicine and Movement Science, Faculty of Medicine and Health Science, Norwegian University of Science and Technology, Trondheim, Norway

Pernille Thingstad

Department of Health and Social Services, Trondheim Municipality, Trondheim, Norway

Department of Primary and Community Care, Research Institute for Medical Innovation, Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, Netherlands

Debby Gerritsen

Geir Selbæk

Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway

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Contributions

GS led the study project and is responsible for the concept and design of the study, together with BHS, SB and TLI. BHS was a major contributor in the analysis prosses together with TLI. TLI, BHS, SB, GL, HL, SEM, ROV, AMMR, PT og GS contributed to interpreting the data. TLI drafted the paper, with substantially contributions from all the authors in revising the drafted work. DG made significant contributions on the revised version after peer review. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Tanja Louise Ibsen .

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Ethics approval and consent to particpate.

This study was approved by the Regional Committee for Medical and Health Research Ethics of Norway (REK Southeast B 182575). All methods were carried out in accordance with REK’s guidelines which correspond to the Declaration of Helsinki. The present study is part of a larger project registered at ClinicalTrials.gov (identification number: NCT 04792086). Informed written consent was obtained from all participants in the HUNT4 70 + study. Participants with reduced capacity to consent were included if they had a next of kin who consented on their behalf. In the consent form, it was thoroughly described that collected data can be linked to other registers in order to carry out approved research projects, as has been done in the present project.

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Ibsen, T.L., Strand, B.H., Bergh, S. et al. A longitudinal cohort study on the use of health and care services by older adults living at home with/without dementia before and during the COVID-19 pandemic: the HUNT study. BMC Health Serv Res 24 , 485 (2024). https://doi.org/10.1186/s12913-024-10846-y

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DOI : https://doi.org/10.1186/s12913-024-10846-y

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