Tilburgs, B. et al. | The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study | BMC Geriatrics (2018) 18:184
ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia.
A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes.
Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting.
ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs’ time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers.
ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs’ availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.
Healthcare professionals in GP surgeries and the community will soon give advice on dementia risk to patients as part of the NHS Health Check.
Adding the dementia element to the NHS Health Check programme will enable healthcare professionals to talk to their patients about how they can reduce their dementia risk, such as by maintaining their social life, keeping mentally and physically active and stopping smoking.
It is estimated that over 850,000 people are living with dementia in the UK with little public understanding of how it’s possible to reduce the risk. While much of the NHS Health Check focuses on reducing cardiovascular disease (CVD) risk, the advice for preventing CVD is much the same as for dementia: ‘what’s good for the heart is good for the brain’.
iSPACE is helping surgeries improve support for patients with dementia and their carers | AHSN
iSPACE is a quality improvement and innovation programme delivered in GP surgeries in all parts of Hampshire, Dorset, Isle of Wight and south Wiltshire. The aim of iSPACE is to improve the pathway of patients with dementia and their carers through primary care.
The key to the spread of iSPACE is the engagement of staff teams and a recognition that people with dementia need a more personalised care plan and access to resources to help them and their carers to better manage the pathway.
Wessex Academic Health Science Network (AHSN) worked with Alzheimers charities, clinical commissioning groups (CCGs), Public Health England (PHE), Health Education England (HEE) and companies providing dementia services both within and outside the NHS to deliver this project. The AHSN delivered the project into 153 GP surgeries providing training, access to resources, meetings to encourage progress and physical resources such as funding for environmental changes and literature.
Patients reported feeling more supported by their surgery; carers reported a greater understanding of dementia from the surgery team and seeing the same clinician at each appointment. Dementia diagnosis rates increased (15.9% for people aged over 65), care planning increased by 26% for face to face reviews and 80% of surgeries now have a dementia noticeboard.
The Young Dementia Network has created a young onset decision making guide for GPs.
This guide aims to support GPs in identifying the most common signs and symptoms of young onset and rarer forms of dementia. It aims to help GPs identify ‘red flags’ which suggest referral to specialist diagnostic services may be required.
• Over 42,000 people are living with young onset dementia in the UK.
• It takes on average 4.4 years for younger people to be diagnosed, twice as long as older people, delaying access to treatment and support.
• Many younger people are misdiagnosed with depression, anxiety, stress, marital issues, menopause or personality disorder.