Development of guidelines for family and non-professional helpers on assisting an older person who is developing cognitive impairment or has dementia: a Delphi expert consensus study

Given the large number of people affected worldwide [1], there is a growing need for in-home and residential care for people with dementia. Giving such care often involves consistent re-evaluation of decisions about safety, driving restrictions, healthcare, level of care and end-of-life issues [2‐5], causing significant strain on carers [6, 7]. Research indicates that dementia carers are more likely than non-dementia carers to have mood and anxiety disorders, insomnia, substance use problems and physical health problems [8‐12]. Carer burden not only negatively affects the carer, it may also negatively affect the person with dementia. Carer stress and decreased coping skills are associated with increased risk of institutionalisation, an increase in challenging dementia behaviours and relationship stress, and decreased survival rates [13‐15]. On the other hand, positive carer coping skills have been shown to be associated with slower dementia progression [16].

Two possible ways of ameliorating the negative affects of carer burden are earlier detection and diagnosis of dementia, and carer training. For a person developing dementia, the initial period between the first manifestation of the illness and a formal diagnosis can be lengthy, with one estimate giving an average of 21.5 months [17]. Early diagnosis and intervention may be helpful in not only slowing the progression of dementia, but also in reducing the negative personal impact of dementia on the carer and the person with dementia [18]. For example, in a longitudinal study, carers who were able to recognise the early symptoms of dementia and seek a diagnosis, as opposed to those who recognised symptoms after or at the same time as diagnosis, were less likely to show signs of poor adaptation to the stressors of caring and also less likely to later place their loved one in institutionalised care [19]. Furthermore, carer training designed to alleviate carer distress and improve carer coping skills has been found to lead to longer survival time of the person with dementia and delay of admission to institutional care at 5 and 8 year follow-up [20]. Furthermore, carers who receive training that focuses on increasing carer competence and coping skills report fewer behavioural problems and slower decline of independence in the person with dementia [21, 22]. These studies indicate that training may improve the quality of life for the carer and also the person with dementia.

While training of family carers is now well established, there is a need for greater skills across the whole community in how to support a person affected by dementia. There has been a worldwide movement to increase the skills of members of the public in providing assistance to people with mental health problems through Mental Health First Aid (MHFA) training [23]. MHFA training increases knowledge about mental health problems, decreases participants’ stigmatising attitudes, and increases the likelihood that they will provide appropriate first aid actions [24]. However, to date this form of training has not been extended to cover helping an older person who is developing cognitive impairment or has dementia, or delirium.

The content of MHFA training has been based on expert consensus guidelines developed using the Delphi method [25‐36]. In order to extend the content of MHFA training to cover how to assist an older person who is developing or has dementia, or delirium, we have carried out the current study. The aim was to develop guidelines that would be useful for persons in family or paid caring roles, as well for members of the public who may find themselves in a situation where they can assist.

For the purposes of this study, older person is defined as a person who is 65 years of age or older. The term helper is used, rather than carer, to include those who may not be in a formal caring role (i.e. family or paid carer), but who still provide care (e.g. family members, neighbours, friends who may provide respite or occasional care).

The Delphi process [37] is an expert consensus method that can be used to develop best practice guidelines using practice-based evidence. Development of the current guidelines involved four steps: (1) formation of the expert panels, (2) literature search and survey development, (3) data collection and analysis, and (4) guidelines development.

This research aimed to develop a set of guidelines on how family and non-professional helpers can assist an older person who is developing cognitive impairment, or has dementia or delirium. Overall, 389 items were endorsed by both expert panels as important or essential to be included in the guidelines. The endorsed items were written into a guidelines document that is available to the public from the Mental Health First Aid Australia website (mhfa.com.au). A strength of the guidelines is that they address a wide variety of topics or situations that a person may encounter when assisting an older person with dementia. In particular, it addresses a number of issues that have been identified as particularly challenging for carers of people who have dementia [17, 43].

Dementia is an illness that can cause significant helper burden and stress, potentially leading to a decline in quality of life for the person with dementia and their loved ones. Expert consensus (carer advocates and professionals) was reached on 389 items that were used as the basis for a guidelines document related to assisting an older person who is developing cognitive impairment or has dementia, or delirium. These guidelines will provide guidance to helpers on a number of commonly encountered challenges; they will also inform future training for the public on how to assist an older person who is developing cognitive impairment, or has dementia or delirium. It is hoped that this training will lead to a decrease in the burden experienced by people with dementia and their carers.

MHFA, mental health first aid