Introduction

The term dementia describes chronic or progressive dysfunction of cortical and subcortical function resulting in complex cognitive decline [1]. Dementia can take many forms, the most common of which is Alzheimer’s disease [2]. Neuropsychiatric problems, including affective disorders, personality change, behavioural difficulties and eating disorders, occur in 90% of dementia patients [3] and are the principal causes of carer-stress. Personality and behaviour changes in dementia directly correlate with carer feelings of burden [4]. The development and course of dementia is variable where moments of lucidity and insight occur erratically and persist well into the disease course. According to the WHO [5], dementia contributes more to years lived with a disability in people aged over 60 years (11.2%), than stroke (9.5%), cardiovascular disease (8.9%), all forms of cancer (2.4%) or musculoskeletal disorders (8.9%). The 2009 10/66 Dementia Research Group [6] concluded dementia is the most important independent contributor to disability for elderly people in low and middle income countries. Patients with dementia in Ireland live 8 years on average after initial diagnosis but for as long as 20 years from the onset of symptoms [7], resulting in a protracted period of caregiving [8] with substantial economic strain [9, 10]. Despite this dementia is not well-recognised as a terminal illness [11]. Patients with dementia are heavy users of the health service, accounting for 0.6% of UK gross domestic product or £4.1 bn or €7.7 bn [12].

The world prevalence of dementia is estimated at 24.3 million with 4.6 million new cases per annum [13]. This figure is projected to double every 20 years to reach 81.1 million by 2040. Dementia affects 1.5% of 65 years and 30% of 80 years [14]. The majority of patients with dementia in Ireland live in the community [15]. The number of patients in Ireland with dementia in 2010 is over 38,000 with 50,000 linked dementia carers [16]. Between 2002 and 2036, the number of patients with dementia in Ireland is expected to increase by a staggering 303%, while the total population will increase by less than 40% (Fig. 1) [17].

Fig. 1
figure 1

Projected growth in the number of people with dementia in Ireland. Adapted from Reference [21]

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In Ireland the stated objective of public policy for patients with dementia is to encourage and assist continued living at home for as long as it is feasible and practical [18]. Family carers remain to be the cornerstone of support for patients with dementia whose daily functioning critically depends on the quality of care received at home [19]. Dementia caring has been described as a “career” [20] where the carer may go through several transitions during the course of the patient’s illness up to and beyond nursing home admission [21].

The Action Plan for Dementia [22] (APD) published in 1999 by the National Council on Ageing and Older People emphasised the need for a social model of dementia focused on community-led care with “multi-layered and well-resourced services” provided by primary and community care. General practitioners are envisioned in this report as “critical agents in the process of care”. Regrettably a more recent report, published in 2007 by the Alzheimer’s Society of Ireland [23], showed very few of these recommendations implemented with services for dementia carers under-resourced and over-stretched, home-help rationed, minimal respite opportunities, and support provided predominantly by general practitioners and public health nurses. Given this background, the aim of this review was to assess the role of Ireland’s general practitioners in caring for dementia carers.

Methods

A PubMed search (1980–2010) was performed using the MeSH terms “caregivers or carers”, “dementia or Alzheimer’s disease”, “family physician or general practitioner”. An English language restriction was imposed and the search continued up to June 24th 2010. The literature search yielded 22 papers of which only 6 were deemed eligible for inclusion. The references of these articles were then manually searched, from which the bulk of papers for this review were obtained. The Cochrane Library was also searched for systematic reviews related to dementia patients or carers.

Results

Who cares for dementia?

The Centre for Ageing Studies in Ireland [24] depicted the typical Irish dementia carer as female, married, aged 40–54, engaged in home duties and related to the person for whom they are caring. This carer profile corresponds with international norms [25]. Acting as a carer has been described as “the odyssey of becoming more human” [26] with some carers describing the experience as enriching [27] and reporting high levels of fulfillment with their role [28]. For the majority though, caring is demanding and unrelenting. Dementia carers form a distinct patient group for general practitioners in Ireland given the nature of dementia and the consequent physical, mental and emotional toll on the carer over a prolonged time period. The Manchester Carer Study [29] found that men more than women with dementia, generate more stress in carers (male or female), but female carers are more stressed in the caregiving role than male carers. A stressed carer is less able to cope, increasing the likelihood of institutionalisation of the patient [30].

Morbidity and mortality

Caring for a family member with dementia has been shown to increase the carer’s risk of morbidity [31, 32] and mortality [33] and untreated behavioural and psychological problems in the dementia patient are associated with carer burn-out [34, 35]. Carers are less likely to engage in preventative health behaviours [36], have a more poorly functioning immune system [37] and experience poor wound healing [38]. Sleep deprivation linked to changes in the sleep pattern of the dementia patient leaves carers exhausted [39] and the erratic night time activity of dementia patients is cited by 70% [40] of carers as the predominant reason for placing their loved ones in a nursing home. Community studies have shown high rates of abuse both of and by the dementia patient [41–43] and concerns have been raised about the lack of provision of emotional care for carers [44–46]. Up to 50% of dementia carers develop psychological problems during the course of caring, particularly depression [47, 48]. In a 2-year longitudinal study, the rate of depression among dementia carers was significantly higher when compared with those caring for loved ones with other terminal illnesses such as cancer [49]. Depression and use of psychotropic medications [50] is associated with poorly coping carers [51], highlighting the need for involvement by the general practitioner [52]. In Ireland, over 90% of dementia carers experience feelings of confinement and almost two-thirds report feeling completely overwhelmed by caring (Fig. 2) [23]. A study that assessed end-of-life care in dementia [53] looked at the lives of 217 family carers during the 12 months prior to death and found over 50% of carers were spending at least 46 h per week assisting with activities of daily living and a similar number reported feeling they were on call 24 h a day.

Fig. 2
figure 2

Caregiver strain index for dementia carers. Adapted from Reference [21]

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What do carers want from general practitioners?

In a longitudinal study by Williams et al. [54] carers stated they wanted their general practitioner to educate them on the natural course of dementia, the cause of symptoms, and the priority symptoms to watch out for. Disappointingly, a multinational survey of 741 dementia carers published in 2004 [55] found only 50% of carers were satisfied with their general practitioner’s dementia-management skills. Two cross-sectional studies [45, 46], which followed 52 and 47 carers, respectively, reported carers felt general practitioners were unaware of their personal needs and worries. A request for physicians to look beyond the medical needs of the dementia patient has also been expressed by carers [56]. There is also a suggestion that some general practitioners may be reluctant to get involved in caring for dementia patients citing lack of professional competency, the belief that nothing can be done for dementia patients, and the dearth of resources to support them in their role [57–59].

Optimising care for carers

Psychosocial interventions

Psychosocial multidisciplinary interventions for carers are cost-effective, improve carer’s health and quality of life [60], and delay institutionalisation [61]. Carers benefit from acquiring skills and knowledge pertaining to the core tasks they perform and develop a sense of self-efficacy and confidence. Lack of carer training has been shown to be a more significant predictor of institutionalisation than dementia severity or psychological morbidity [62]. In a controlled trial [63], of 153 patients and their carers, an intervention group (n = 84) received 12 months of care management via a multidisciplinary team within the primary care setting led by an advanced nurse practitioner that included education, coping skills, legal and financial advice, guidelines on suitable exercises for the dementia patient, and a carer’s guidebook written by a local branch of the Alzheimer’s Association while an augmented usual care group (n = 69) were treated by a general practitioner with no additional care received. The intervention carers reported significant improvement in distress as measured by Patient Health Questionnaire-9 during the trial. Importantly, fewer behavioural and psychological symptoms of dementia, as measured by the total Neuropsychiatric Inventory (NPI), were seen in the intervention group patients at 12 and 18 months.

The New York University Caregiver Intervention [64] (NYUCI), a randomised controlled trial ongoing since 1987, compared a psychosocial family-support programme to a usual-treatment control group. The NYUCI has shown six sessions of individual and family counseling, followed by weekly availability of a support group and ad hoc counseling, were significantly more effective than usual care in decreasing depression amongst carers and delayed patient institutionalisation by an average of 329 days. In a 15-year randomised controlled trial of 406 spouse carers, Gaugler et al. [65] assessed the benefit of counseling and support throughout disease progression and found burden and depressive symptoms significantly lower for carers in the treatment groups when compared with controls both before and after institutionalisation. Similarly, Brodaty et al. [66] provided carers with an intensive 10-day residential programme with a variety of professionals learning how to deal with stress, social isolation and guilt, community services, coping skills, and planning for the future. Telephone conferences were arranged at regular intervals between study coordinators and carers and reunions were held for follow-up assessments at 3, 6 and 12 months after the programme was completed. This intervention was associated with a significant delay in institutionalisation of dementia patients (p = 0.08) and patients tended to live longer (p = 0.037). Interestingly for carers, once dementia had progressed the benefits of psychosocial intervention diminished, highlighting the need for early intervention strategies by the general practitioner.

Occupational therapy

Community occupational therapy has been shown to improve daily function, social participation, and the wellbeing of patients with dementia while at the same time improving the sense of competence and wellbeing of carers [67]. A randomised controlled trial [68] involving 135 patients with mild to moderate dementia stable on cholinesterase inhibitors and living in the community found a 5-week occupational therapy intervention consisting of 18 h per patient and carer improved the functioning of the patient and reduced the burden of care on the carer and this was maintained at 3 months.

Respite care

The provision of respite care, either in the home or in a day care or residential setting, is looked on as an essential component of any national dementia strategy [69, 70] and has been shown to reduce carer burden [71]. Increased availability and flexibility of respite care is a common request in surveys of carers [72]. Understandably, some carers feel overwhelmed at the thought of returning to work when the respite period ends [73]. The Alzheimer’s Society of Ireland [74] provides day care centres that enable patients to engage in structured activities in a supervised environment with professional assistance providing essential stimulation for the dementia patient while giving the carer a break. The society also provides a home care service whereby a qualified dementia care worker is available to attend the patient’s home and provide assistance with activities of daily living at any stage of the disease.

Support groups

Support groups such as The Alzheimer’s Society of Ireland and the Carers Association of Ireland, provide families with much-needed information on dementia, practical support and an expressive or advocacy outlet. For rural carers unable to access support group meetings, there is emerging evidence of the merits of teleconferencing to relay meetings to house-bound carers where suitable technology is available. A 2006 study by Bank et al. [75] found telecommunication technology can be used to overcome logistical problems faced by carers in attending meetings in person yet obtain the same benefits. This approach providing telecare to dementia patients and carers has been highlighted in the 2009 National Dementia Strategy [76] published by the UK Department of Health.

Institutionalisation: an end of caring?

As many as 90% of patients with dementia are institutionalised before death [77]. A key role for general practitioners in Ireland is to work in unison with the patient, their family, and other health professionals to plan institutionalisation in response to a predicted stage of the disorder rather than a kneejerk reaction to family crisis or carer burnout. Institutionalisation, however, is not a panacea for carer stress as it can create other difficulties such as guilt, exclusion from decision-making and care, financial burden, and understandably, difficulties in maintaining relationships [78, 79]. Institutionalisation is not an endpoint in family caregiving and the transition can in itself prove extremely stressful [80, 81], posing new challenges for families such as relinquishing their care role to staff relatively unknown to them and inheriting an ambiguous yet not wholly relinquished care role [82]. A report published in April 2010 entitled “Continuing to care for people with dementia: Irish family carers’ experience of their relatives transition to a nursing home” [83] emphasised the importance of a smooth transition from the family home or hospital to long-term care for the wellbeing of both the patient and carer. General practitioners need to be aware of the possibility of increased psychological morbidity in carers, which may persist for up to 2 years after the dementia patient is institutionalised [84].

Conclusions

Primary care is the point of first contact in Ireland and the setting to ensure both initial detection of dementia and effective ongoing management for both the patient and the carer. Evidence-based interventions in primary care which unite education, skills training, management of depression and family support can significantly decrease the burden for carers of dementia patients [85, 86]. General practitioners in Ireland should be vigilant for adverse health outcomes in carers not only while providing care at home but also after the patient is institutionalised [87].