Views of Conventional Medicine and Integrative Medicine among Informal Dementia Caregivers and Healthcare Professionals in NW England

Garuth Eliot Chalfont ^*, Jane Simpson , Fiona J R Eccles , Christine Milligan 

Centre for Ageing Research, Division of Health Research, Faculty of Health and Medicine, Health Innovation 1, Lancaster University, Lancaster LA1 4YG, UK 

* Correspondence: Garuth Eliot Chalfont

Academic Editor: James S. Powers

Received: September 06, 2019 | Accepted: January 19, 2020 | Published: January 21, 2020

OBM Geriatrics 2020, Volume 4, Issue 1, doi:10.21926/obm.geriatr.2001102

Recommended citation: Chalfont GE, Simpson J, Eccles FJR, Milligan C. Views of Conventional Medicine and Integrative Medicine among Informal Dementia Caregivers and Healthcare Professionals in NW England. OBM Geriatrics 2020; 4(1): 102; doi:10.21926/obm.geriatr.2001102.

© 2020 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.

1. Introduction

Dementia is understood to be a progressive, irreversible neurodegenerative disease in which the structure and chemistry of the brain becomes increasingly damaged over time. This particular narrative of dementia invites care and support as the dominant responses, supplemented by pharmacological treatments or neuropsychological approaches, which at best delay decline [1]. However, due to the existence of non-pharmacological approaches it is appropriate to review and compare the costs and benefits of different approaches and the extent to which a more integrative approach might be beneficial. Recently, a multiple case study report provides preliminary support for a multi-component approach to slowing cognitive decline [2], adding to the growing evidence base for this approach improving cognitive function for persons with mild cognitive impairment or dementia [3,4]. The current study explores the potential for integration of a multimodal approach within dementia treatment in the UK.

Integrative medicine (IM) is an umbrella term that covers a broad array of modern and traditional approaches to health. Rakel (2017) describes IM as healing-oriented medicine that takes into account the whole person [5], including all aspects of lifestyle and therapies from various cultures, while focusing on the least invasive, least toxic and least costly [6]. Current interest in IM as well as the rationale for choosing to investigate it in this study is largely driven by conventional medicine’s limited ability to reduce the prevalence of chronic long-term conditions (LTCs), coupled with IM’s recent effectiveness in neurological conditions [7], diabetes [8] and obesity [9]. The typology in Table 1, based on Ring and Mahadevan [10] expresses the full range of modalities that might be included in what is called an integrative medicine approach.

Table 1 Integrative Medicine (IM) modalities.

As one example of IM (see Table 1), whole systems approaches purport to activate the body’s inherent healing mechanisms and can thereby treat the root cause of illnesses [11]. Whole systems modalities offer multimodal interventions logically suited to address the multidomain causes of chronic LTCs [12]. Functional medicine (FM) is one such modality which trains practitioners in a root cause analysis approach to treating chronic disease [13,14]. An FM prescription may include acupuncture, Ayurveda, chiropractic manipulation, detoxification programs, herbal and homeopathic supplements, specialized diets, massage, meditation and mindfulness practices, neuro-biofeedback, nutritional supplements, Tai chi or yoga. One study looking at the FM model recently demonstrated beneficial and sustainable associations with health-related quality of life [15].

Regarding dementia, a multiple case study report by James et al. has shown preliminary support for the feasibility of using a multicomponent FM approach to slow cognitive decline [2], providing imaging evidence of improved brain connectivity and efficiency. Prior studies have demonstrated reversal of cognitive decline, improved memory and quality of life with a personalised multimodal approach (Bredesen et al. 2016; Bredesen et al. 2018) [16,17]. While the above studies occurred in the Netherlands and North America, the current study builds upon recent case reports in the UK demonstrating improvements in symptoms of memory decline from a personalised multimodal approach [18].

In the UK, conventional medicine is offered free of charge to all National Health Service (NHS) patients. However, if a patient chooses to attend an IM practitioner for treatment, it is an adjunct to their routine NHS care, for which they need to pay privately. The reasons why patients and caregivers choose to look beyond the standard NHS provision may be cultural preference and language spoken, religious or community beliefs about health and disease, distrust of pharmacology, recommendations from friends and community, health literacy and so on. It is therefore necessary to hear a diversity of voices in order to design interventions relevant to people, places and situations [19].

IM practitioners are medically qualified and able to integrate their treatment with what the patient is also receiving from their own general practitioner (GP). IM practitioners are often GPs who have undertaken further training in an IM modality. It was these rare GPs with IM training whom we sought in our study as they could share insight into the benefits and barriers of both worlds from lived experience. We sought further insight from NHS GPs and healthcare professionals not trained in the IM approach and working only in the NHS conventional medicine paradigm, either in a GP surgery or the memory assessment service (MAS).

Based on this accumulating evidence, our study had the following aims:

1) Describe conventional medicine (NHS and MAS) and integrative or functional medicine (I/FM) treatment approaches for dementia in NW England

2) Explore the views of informal dementia caregivers and service users, compared to healthcare professionals on the benefits and barriers to providing and receiving these two approaches

3) Investigate views on needs, expectations and a vision moving forward

2. Methods

2.1 Design

The study design consisted of 32 semi-structured interviews, 3 focus groups and a deliberative workshop with dementia caregivers, service users and healthcare professionals (see Table 2) conducted over a 13-month period in England. As we aimed to understand attitudes, beliefs and views, we chose to gather qualitative data which permitted the in-depth exploration and understanding of the perspectives of the population of study as they encounter, engage and live through situations [20]. An interview schedule was developed to explore the perceptions of family carers and healthcare providers on the challenges and needs in providing and receiving such treatments for dementia. Interview topics for caregivers included their experience, support needs, expectations and outcomes accessing NHS services for dementia or memory problems; their awareness or experience of holistic lifestyle treatments for memory problems and dementia; their views about the benefits or disadvantages to such treatment programmes; expectations or willingness to pay in money, time or effort; support anticipated or required; interest, willingness and ability to use online resources, technology and so on. Interview topics for GPs or healthcare professionals included their role and involvement in providing services for dementia or memory problems; awareness and experience with holistic lifestyle treatments; what constitutes their treatment approach; successes and challenges in delivering it; benefits or disadvantages; extra services or support required (e.g. testing, coaching, supplements); costs to the patient involved; internet and technology use, etc.

To further elucidate needs and views going forward, a deliberative workshop and feedback interviews were held to present preliminary findings of the earlier interviews and focus groups to participants, and to hear their reflections and further thoughts on framing a future vision for dementia treatment. Within this workshop preliminary findings were also presented from recently completed case reports mentioned above [18].

Table 2 Participants – location, attendance and demographics.

2.1.1 Participants

We involved a purposive sample of 49 participants (Table 2) in 32 interviews, 3 focus groups and a deliberative workshop. The non-random technique of purposive sampling was used to enable the deliberate choice of participants due to the qualities they possessed as discussed below [21].

2.1.1.1 Group 1 included informal dementia caregivers and service users from the communities of Lancaster and Tameside (an area in Greater Manchester). These two areas were chosen for their comparatively different sociocultural and ethnic demographics in an effort to recruit people of diverse backgrounds and experiences. Group 1 was recruited through organisations including the University of the Third Age, the Centre for Ageing Research Continuing Learners Group and Dipak Dristi (an Asian day-support organisation for elders). Participants were aged between 42-90 years and identified as white British, Japanese or Gujarati Asian Hindu with heterogeneous socioeconomics, education, occupation, mobility and English fluency. The Tameside focus group, whose participants were older Hindu women in the Asian community, was co-led by a Gujarati-speaking translator who was known to them as she assisted with their weekly activity group at the community centre. We conducted and recorded dyadic interviews which were transcribed and translated by this fluent English-Gujarati translator. Participants in Group 1 received travel reimbursement and gift cards.

2.1.1.2 Group 2 included healthcare professionals identified through practitioner organisations, a local health collaborative, a national healthcare conference and clinical practices. Four GPs practised NHS conventional medicine only and one healthcare professional worked in the MAS. Two IM practitioners worked both in GP practices as well as in private clinics, having pursued further training in an integrative medicine modality, including FM. Both GPs were committed to regular interviews, giving a total of 15 over 13 months, for which they were remunerated. Group 2 ranged in age (42-66 years) and in gender (5 men, 2 women). Five practitioners identified as white British and two as Gujarati Asian Hindu. All were based in NW England although some of their patients came from outside this area. These 5 practitioners received gift cards. All practitioners self-identified as being involved in treating people with cognitive decline or dementia, identifying as IM or FM (I/FM).

Lancaster focus groups (L1 & L2) occurred in March 2018. In Tameside a focus group (T1) occurred in April. Upon returning in June, the research was conducted following guidance from the group gatekeeper advising that the participants (who were people with dementia and their family caregivers) preferred to meet with the researcher dyadically instead of collectively in a group. They felt more comfortable to talk about their dementia experience privately, rather than in front of their peers. Feedback was also given and discussed in interviews in November.

2.1.2 Dementia-Specific Research Processes

These productive research collaborations were enabled by building relationships [22] with local groups and organisers for 2 years prior to the research commencing. The gatekeepers were aware, sensitive and shared their thoughts and concerns prior to and throughout the research and the data collection processes. Also, in some circumstances the term ‘memory problems’ was found to be more culturally appropriate. Hence ‘situational sensitivity’ was required and cues were taken from the family carer in such situations [23].

Research ethics approval was granted by the researchers’ host institution.

2.2 Data Analysis

Data from interviews and focus groups were analysed using framework analysis (FA), a systematic and flexible approach to analysing qualitative data [24]. FA is an emerging method of qualitative thematic data analysis that is increasingly used in healthcare studies [25]. Originally developed for applied social policy research this approach is increasingly used in health care research [26,27]. FA involves a 5-step process: 1) familiarisation through data immersion; 2) developing a theoretical framework by identifying recurrent and important themes; 3) indexing and pilot charting; 4) summarising data in analytical framework; and 5) synthesising data by mapping and interpreting [25]. The researcher [GC] undertook the initial framework development which was then shared and refined through discussion with the wider team.

3. Results

3.1 Research Question One

Describe conventional medicine (NHS and MAS) and integrative or functional medicine (I/FM) treatment approaches for dementia in NW England.

Descriptions of both approaches are compared in Table 3. During the research we found practitioners identified with the title of either IM or FM, depending on their training. We therefore include both in the data analysis below and designate this as I/FM.

Table 3 Dementia treatment approaches – the NHS and the MAS compared to integrative medicine or functional medicine.

3.2 Research Question Two

Explore the views of informal dementia caregivers and service users, compared to healthcare professionals on the benefits and barriers to providing and receiving conventional NHS medicine alone or alongside I/FM (Table 4).

Table 4 Benefits and barriers - conventional medicine (NHS and MAS) compared to integrative medicine or functional medicine.

These tables summarised the views of informal dementia caregivers and service users, compared to healthcare professionals on the benefits and barriers to providing and receiving conventional NHS medicine alone or alongside I/FM. Themes included inequalities of socioeconomics and access, diversity of cultural needs, disempowerment, demotivation and physician pressures. For instance, the NHS conventional medicine approach provided free nearby access, highly rated MAS support and good quality web-based information. Barriers included limited discussion of non-pharmaceutical treatment options, low-morale and high rates of stress and burnout among GPs who felt de-motivated as they could not slow or stop the progression. Treatments needed to be much more complex and individualised, a lot of time is needed which GPs do not have. Whereas simple, straightforward interventions, were much easier to make. I/FM benefits included in-depth investigations to determine the underlying causes of a patient’s dementia, practitioners trained in addressing them, and some memory impaired patients who were able to improve. Barriers included limited access to I/FM practitioners, the need to pay for service, difficulties of making lifestyle changes such as diet, need for strong caregiver support and/or hiring a health coach – all contributing to poor patient compliance.

3.3 Research Question Three

Investigate views on needs, expectations and a vision for dementia treatment. This includes data from feedback interviews and the deliberative workshop. Participants included dementia caregivers and service users (Table 5).

Table 5 Needs, expectations and a vision for dementia treatment.

Participants envisioned a broad scope to solving the problem of dementia, seeing it as a wider environmental, social and spiritual concern beyond the biomedical aspects, calling for a more holistic vision moving forward. People saw a whole systems approach as one that addressed a complexity of needs. These included ensuring cultural and generational empowerment and relevance; making evidence available and shared, as well as having information, resources and support available to learn, seek and grow. They proposed a range of activities and environments for use with emphasis on creative endeavours and connection to nature. They argued for true integration of treatment approaches, including the provision of transport and support. They highlighted the need to measure and evaluate technologically in order to build the evidence base and to inform participants about their progress. Participants also offered consideration to issues such as cost, benefit, willingness to pay and marketing.

4. Discussion

Through a qualitative investigation, this study: 1) described conventional medical treatment provided through NHS GPs and the MAS, compared to IM offered privately as an adjunct to this routinely provided treatment; 2) gained the perspectives of informal dementia caregivers, healthcare professionals and older service-users on the benefits and barriers of these two dementia treatment options in NW England; and 3) gathered their views on formulating a dementia treatment intervention moving forward.

Although benefits could be attributed to both approaches, neither were unproblematic for the practitioner, the carer or the patient. Barriers related to socioeconomics, health inequality, sociocultural forces undermining care, patient disempowerment, demotivation, the need for support, conflicts between conventional and I/FM approaches, and physician pressures from colleagues and patients. In supporting the patient and carer, concerns were raised about the need to bridge the gaps in knowledge, resources, confidence and communication, including both strategic and emotional support. In response to the benefits and barriers, caregivers provided an array of needs and expectations, as well as a clear vision to take forward into formulating a whole system integrative intervention.

Results reported poor compliance and good potential for both approaches. This seems to suggest that certain cultural groups, where western conventional medicine is less common and the practice of traditional medicine has a long history, may be more open and accepting of IM approaches. This deserves consideration when developing culturally relevant interventions. There was an unexpected depth of reflection about emotional psycho-spiritual needs and the well-articulated resource needs.

We were able to reach traditionally ‘hard to reach’ populations as 21 of the participants were from first or second generation South Asian families (originally from the Indian sub-continent or Africa) living in an area of so-called social and economic ‘deprivation’ in NW England [28]. We experienced none of the language barriers encountered by others discussing cognitive health issues with this population [29]. To avoid possible problems when using an interpreter, we had the audio tapes transcribed verbatim by a bilingual translator.

We acknowledge that the views of a purposively sampled group of people is non-generalisable. This is one of the first qualitative studies to address this topic. It is worth noting that the opinions expressed were not unlike those reflected in the literature, including problems with polypharmacy [30] and patients’ needs for informed GPs willing to collaborate with complementary practitioners [31]. Furthermore, this study echoes others showing considerable interest from primary care providers for integration [32], who referred patients because patients requested it (68%) or because conventional medicines failed (58%) [33]. They also found that barriers to integration included NHS staff attitudes or lack of knowledge. Beyond the remit of our study is the issue of cost-effectiveness and cost savings, which have previously been shown across a variety of IM therapies and populations [34].

Further research is needed to provide the views of people formally diagnosed with cognitive impairment or early dementia on the challenges they would face in adopting a more I/FM approach and to help guide any proposed intervention.

4.1 Recommendations

1. Continued implementation and evaluation of integrative medicine treatment approaches for cognitive decline and dementia 
2. Further attention to caregiver support, in particular regarding their self-care and motivation towards achieving treatment outcomes
3. Cooperative collaborations between conventional and integrative medicine practitioners
4. Shared decision making in determining personalised treatment plans for individual patients 

5. Conclusions

There is an urgent need for innovative approaches to dementia treatment that are acceptable, effective and affordable. Although participants expressed mixed satisfaction with conventional NHS medical treatment, the growing integrative medicine approach described and considered herein is also difficult to achieve, and patient outcomes are less than predictable. When invited to discuss dementia treatment options, caregivers and older service-users envisioned future provision within a broad environmental, social and cultural context, calling for a pragmatic holistic vision moving forward. Findings suggest support for developing an integrative medicine model of dementia treatment informed by patient, caregiver and practitioner experience and co-design.

Acknowledgments

The authors wish to thank Dipak Dristi, the University of the Third Age Lancaster and Morecambe, the C4AR Continuing Learners Group, the NHS Memory Assessment Service Lancaster-Morecambe and the healthcare practitioners for their time, efforts and collaboration in this research.

Author Contributions

All authors made substantial contribution to the conception and design of the study and the analysis and interpretation of data, have critically revised the paper’s content and approved the final version.

Funding

We are grateful to the AIM Foundation for funding this research.

Competing Interests

The authors have declared that no competing interests exist.