Caring for those living with dementia

: Appreciating perspectives for rural primary care teams

Abstract

Background and introduction
Concerns about managing the healthcare needs of an aging population are growing. Significant among these relate to dementia and its impact on the individual, caregivers and healthcare system. It is estimated that 850,000 people are living with dementia in the UK. This figure is expected to grow rapidly by up to 146% by 2050. The consequent health and social care expenditure on services for people with dementia could be expected to double within 20 years. Currently in the UK 61% of people living with dementia do so in the community, with only 39% in care homes, with the primary care team the first point of call for these patients. Currently in Northern Ireland there are 14, 728 people living with a diagnosis of dementia. According to the dementia statistics hub from 2006/07 to 2015/16 the number of people on the dementia register rose from 9,500 to 13,617, an increase of 43%.

Official figures show that the rural population in the UK will increase by 6 per cent over the next decade. Challenges for people in these areas include transport to services eg hospital appointments in urban areas, expense of travel, isolation and loneliness. 
 
The double impact of living with dementia and rural isolation can lead to negative impact on QOL and health. People with dementia often stop doing things they enjoy in the community as their disease progresses, due to lack of understanding, stigma and inaccessible environments and support facilities. This is compounded for people living in a rural community.

A broad literature search was carried out which revealed that some studies have been done to assess the challenges for carers of patients with dementia in rural areas but less information was available looking at challenges for rural primary care teams.

A subsequent scoping literature review was carried out which posed the question; what is known in the literature about challenges for rural primary care teams in providing care for patients with dementia? The main perceived challenges related to geography, lack of both specialist and community resources, the stigma attached to a small rural community and distance to services. The studies in this review where mainly all pertaining to rural physicians i.e. doctors. It appears that there is a paucity of published literature looking at the multidisciplinary primary care team as a whole. In addition to this there were only a small number of published studies in the UK and Ireland in this area and none were found that specifically addressed challenges for rural primary care teams looking after patients with dementia in Northern Ireland.

Methodology
The overall aim of this study was to identify challenges for the rural primary care teams in Northern Ireland in providing care for patients with dementia and suggest ways in which care might be improved.

A qualitative approach was carried out involving focus groups consisting of members of multidisciplinary primary care teams in Northern Ireland. The data collected was transcribed, coded and analysed using a template analysis method.

Results
Following analysis of the data four main themes emerged. These themes were 1. Sources of formal and informal care and support (which included the input of carers and support services, and the dynamics of family input) 2. The journey to diagnosis (including healthcare professionals’ perceptions of the diagnostic process and the involvement in this of the entire primary care team) 3. Aspects of rural living (including the challenges of geography with insight to the complications of living with dementia within farming families) 4. Suggestions for future innovations (included examples of capitalising on assets already existing within the community). 
 
Some findings from the focus groups echoed those found in the literature, for example the challenge of geography and lack of support services in rural areas. The primary care teams in the focus groups found that length of time to diagnosis was a huge challenge facing patients, their families, carers and the entire healthcare team, with GPs suggesting that the ability to formally diagnose dementia and prescribe medications in primary care would be hugely beneficial. Staff also felt that more community-based staff would be beneficial to support patients with dementia and their families.  
 
Discussion & Conclusions
This study suggested the need for further training and education of all members of the rural primary care team, both medical and non-medical, in the area of dementia and its impact on those living with it, as well as their families and carers. It also highlighted the benefits of community input, from statutory and voluntary sectors. It highlighted that rural primary care team members value the input of these organisations and would be keen to improve the interface with them and welcome them as members of the multidisciplinary primary care team. Members of the groups offered innovative suggestions such as the development of existing community assets such as social farms, of which patients and their families may avail. The data from the focus groups identified the unique and valuable contribution of primary care staff such as receptionists who are very aware of their local community and are the first point of contact for patients to health care services. This suggests that it would be worthwhile for their contribution to be recognised and formalised as an essential element to the overall provision of care for the benefit of the patient and their family. 
 
The difficulties around farming and associated financial complexities which were mentioned in this study had not been previously noted in the literature.

Date of Award	Dec 2021
Original language	English
Awarding Institution	Queen's University Belfast
Sponsors	Health and Social Care (Northern Ireland) Research and Development
Supervisor	Nigel Hart (Supervisor) & Bernadette McGuinness (Supervisor)