Introduction

A fall is defined as unintentionally coming to rest on the ground or at a lower level through whatever cause [1]. Falls, and their consequences of injury, distress, pain, reduced independence, increased anxiety and negative impact on quality of life, are of great significance for older individuals [2], their carers [3–5] and national health care services [6, 7]. Thirty percent of those aged 65 and over, and 50% of those over 80, fall at least once a year [6]. Within the United Kingdom [UK], falls are estimated to cost the National Health Service [NHS] more than £2 billion annually [6, 7]. Dementia causes loss of memory and other cognitive abilities including ‘executive function’ [planning, judgement and decision-making] [8]. Dementia is progressive and irreversible, and interferes with daily activity. ‘Mild cognitive impairment’ [MCI] is a measurable loss of mental function, which does not interfere with daily activities, but often precedes future deterioration. Half of those with MCI subsequently develop dementia [9]. There is increasing evidence of the adverse effect of cognitive impairment on balance and increasing falls risk [10, 11] especially executive function [12] and visuospatial problems [13]. A two-fold increased falls risk is present in even mild impairment [14].

Dementia is an increasing public health problem for developed societies; prevalence is strongly associated with age and numbers will double over coming decades [15, 16] There is an urgent need to identify interventions that reduce or delay the dependency resulting from dementia; reducing the risk of falls provides one approach to doing this. Falls prevention interventions in general older populations are limited by low uptake [17, 18] poor knowledge, competing demands on time, perceived lack of benefits, and ill-health [19, 20]. Uptake also depends on health professionals’ attitudes to falls interventions [21] and the older person’s personality [22]. Health professionals commonly believe that falls prevention interventions are ineffective for those with cognitive impairment, although the evidence base is weak [23]. Much previous research has excluded older people with dementia [24, 25].

Older adults may cope with negative conceptions of aging by self-protective behaviour, preserving their identity as capable and ‘still young at heart’ [18, 26]. Falls prevention advice may be seen as threatening and unwelcome [18, 20]. Exercise programmes for people with cognitive impairment have, however, been found to improve strength, function and mood [27–29] and to reduce the risk of falls [30]. In addition, there is evidence in general populations to support wider benefits such as cardio-vascular health and improving participation in social activities [31]. Helping older adults engage in any intervention whilst minimising damage to their positive perception of self is an important but difficult challenge. Family members and relatives play an essential role in supporting rehabilitation and falls prevention interventions in those with cognitive impairments, and their views should be heard when considering the acceptability of services [4, 32].

This paper presents findings from a UK study which explored the views and experiences of people with mild cognitive impairment [MCI] and mild dementia, and their relatives, about falls and what they might do to prevent them. We also explored participants’ views about the facilitators and barriers to professional intervention, and their experiences and thoughts about receiving professional support. This was undertaken to inform the design of an exercise-based fall prevention programme for older people with cognitive impairment or mild dementia. The rationale was to target a group who were still relatively able, but who were at high risk of functional deterioration.

Method

This research was reviewed and approved by the NHS National Research Ethics Service Committee, East Midlands Ref 13/EM/1061. All participants provided written consent to take part in the study.

People aged 65 years or older with MCI or mild dementia [Mini Mental State Examination 21-26/30 [33], Montreal Cognitive Assessment 15-25/30 [34], depending on the clinical assessment used by recruiting services], and their relatives were recruited to a study of gait and neuro-cognitive risk factors for falls from Memory Clinics or Falls Prevention Services. A convenience sample of twenty patient/relative dyads was recruited to the qualitative study reported here. Dyads who indicated their agreement to take part in a research interview about their experience of falls and perspectives on strategies for prevention were subsequently contacted by a researcher [TP], a falls specialist occupational therapist who was not involved in the participants’ clinical care. Interviews were held jointly with patients and relatives together to gather data on their experience and perspectives on falls and falls prevention, and on relatives’ role in supporting patients to avoid falls.

All participants were deemed to have mental capacity to consent by the recruiting clinician following a structured assessment, and all provided written consent to take part. The study was approved by an NHS Research Ethics Committee.

Discussion

This study expands our knowledge of patient and relatives’ attitudes to falls risk in the early stages of cognitive impairment and moves towards an understanding of the challenges in engaging this group to maintain health and prevent future falls. Most patients were aware of the risk of falls. A minority were keen to intervene to reduce risk. A quarter of patients reported being engaged in some kind of community group exercise, but a third indicated no interest in this kind of activity now or in the future. Overall, however, patients expressed being open to falls prevention interventions in principle and in the future, but tended to present themselves as ‘doing alright’ and not in need of such measures at the present time. They held different preferences regarding falls interventions which might subsequently be appropriate, and varied in their receptiveness to information and falls prevention strategies; what was a solution for one was not acceptable to another. Numerous barriers to exercise interventions were cited. Supervision was considered important, but relatives were mixed in their willingness and ability to provide this. Individual circumstances and relationships were very important in determining what might be possible and acceptable.

The semi-structured interview approach allowed an in-depth exploration of views, including topics not anticipated in advance. Interviewing twenty dyads enabled a wide range of views to be obtained. By interviewing dyads, the person with cognitive impairment was supported, and their relative was also encouraged to have a voice and make a valued contribution to the study. Accounts were retrospective, so details may have been forgotten, recalled selectively, or issues with insight or judgement may have influenced what was said, such as the tendency to discount or re-define non-injurious falls. It is likely that the incidence of falls, slips or trips was underreported. Relatives may have been selective in what they said in the presence of the person with cognitive impairment, and manifest a desire to articulate their own needs, or psychological defences to facing an uncertain future. The participants were volunteers, predominantly white and reasonably affluent. Different perspectives may have been articulated by a more diverse sample and the findings of this exploratory qualitative study may not be generalised to wider populations. However, their resonance with previous research findings reinforces their relevance and theoretical transferability to other settings [20, 39].

Few previous studies have explored the views of people with cognitive impairment and their relatives about exercise and falls prevention [32], but our findings are similar to those reported for populations without cognitive impairment [4, 18, 20, 22, 39, 40]. Dickenson et. al. [19] describe knowledge, availability, appropriate facilities and design, and experiencing benefits as key facilitators for engaging in falls prevention interventions. Other work with people with dementia [41] indicated that ensuring activities are pitched at the correct level is key to engagement. Health professionals and their response to reported falls played a major role in referral to, and uptake of, interventions [42] as did other forms of positive social reinforcement [23]. Issues such as lack of time and money, and accessibility of location, knowledge about and availability of appropriate services and motivation are barriers to exercise among the general population as well as those affected by cognitive impairment [43, 44]. In maintaining their lives at home, our participants demonstrated resilience and ability, and like frailer people more generally, ‘balance[d] loss and capacity in their everyday lives’ [45]. Participants expressed the hope that they would remain as they were, linking with De Witt et al’s [46] concept of people with dementia ‘holding back time’. The view that ‘anyone can fall’ or suffer an accident, minimises the link to personal vulnerability [18]. Participants resisted a sense of vulnerability and also acknowledged it; the same individual could do both in different parts of the interview, illustrating the tension between the 'real' and the 'ideal' or 'private' and 'public' accounts [47].

Studies have found that relatives are important in ensuring the success of interventions, for positive social reinforcement, as well as providing practical support in matters such as transport [32]. Relatives often act as activity enablers whilst also gate keeping to protect their loved one from potentially demanding or hazardous situations. Relatives have an important role in supporting patients and their input can be critical to the success of effective falls intervention [32]. However, they experience difficulties and ambivalence towards providing this, especially as the patient’s conditions deteriorates [3–5, 48].

The idea that ‘things are OK’ might spring from the desire to maintain a positive sense of identity. This may involve redefining what ‘OK’ is for that person–‘managing’ or ‘soldiering on’ in preserving independence are seen as virtues [18, 22, 39]. Identifying with the current relevance of interventions is a critical point, as anticipation of the future, including the goal of preventing future decline, is not always a cause of present motivation [20]. Participants described making changes to their lives in response to their deteriorating abilities. This contrasts with their expressed idea that interventions were not currently relevant. Indeed, the ‘subjective perception of risk is often at odds with the objective benefits of the behaviour’ [43]. Thus, participants balanced the risk of acknowledging themselves as weaker, and a potential faller, against the potential benefits of falls prevention interventions. Being in need of help is highly disvalued [49] and participants did not present themselves as in need of help during the interviews, preferring to retain a capable presentation of self: ‘we’re doing alright’ [40].

Age-related conditions combined with deteriorating memory are additional challenges for those affected by cognitive impairment [50], particularly the very old: several of our patients were over 90. Co-morbidity and age impacted on patients’ ability to manage physical and social environments, forcing them to adapt or avoid environments that were too challenging. Diminishing cognition was not an openly acknowledged barrier for engaging in interventions, although this would potentially present problems [e.g. finding a new location, remembering appointments, learning new skills], especially without carer support. However, while this is an understandable strategy, risk aversion and using ‘being careful’ as a primary coping mechanism can result in deskilling and the individual’s loss of confidence in their capacity to undertake activities of daily living [20].

Participants who expressed increasing caution felt they reduced their hypothetical risk of falls because they were careful, and so did not perceive themselves at risk of falling. Even those who had fallen, because they were now careful in the situation they attributed as the cause of their fall, did not report themselves to be at risk of future falls [18, 51]. Indeed, the participants interviewed were largely independent and working to maintain function in their own ways. However, the introduction of effective exercise interventions at this point could be critical in enabling people with cognitive impairment [and their relatives] to develop and maintain key skills and prolong functional capacity and sustain their independence in the future.

Slowing or reversing decline through exercise and increased activity could help to preserve the independence and functional capacity which are important constituents of good quality of life [52]. Although perceived risk of falling did change behaviour among some participants, the importance of improving strength and balance to reduce the risk of falls in future was not generally appreciated. This reflects previous findings and demonstrates that this is still an area with great scope for awareness-changing within the general population [18, 20, 39].

It is also important to consider the role of relatives as potentially a barrier as well as a facilitator to successful interventions; they may lack the time or willingness to support the person with cognitive impairment with the intervention, or lack the energy or physical capability required to do this.

Conclusion

This study builds on the existing literature by finding that people with cognitive impairment and their relatives are similar to the wider population of older people in expressing themselves to be amenable, in principle, to falls prevention intervention, but not much interested in practice at the present time. They will need support to personally identify their current relevance and future gain. The introduction of therapeutic interventions, with their consequent implication of diminished capacity, needs to be balanced with preserving confidence and a positive sense of self. Clinicians need to focus on promoting present health, methods to preserve quality of life, independence and wellbeing, as opposed to talking about falls prevention and the negative prospect of risk in order to improve uptake. Pragmatic barriers that everyone faces must also be overcome to ensure accessibility of interventions. Health professionals need to take up the challenge of motivating a group of people with complex needs, who require input to remain independent and preserve quality of life as long as possible.

Acknowledgments

We would like to thank the participants who gave their time generously to the study, the clinical teams who supported recruitment to the project, and Maureen Godfrey [patient and public involvement in research representative] for her support and encouragement.