Difficult conversations for care professionals and people living with dementia

Social care professionals and carers for people living with dementia are often called upon to deliver difficult news. This news forms a key event in a resident’s life, as well as their loved ones, and approaching such subjects can be distressing for all parties. As such, handling the process with care and diligence is enormously important in order to reduce stress for the resident and their family.

People living with dementia can enter care under a variety of circumstances, from those who are just beginning their journey, to those who need immediate palliative care. Care staff may need to approach difficult subjects very quickly, be they lasting powers of attorney and future wishes, ‘do not attempt cardiopulmonary resuscitation’ (DNACR), or complex care decisions.

Difficult conversations like these require a great deal of patience and sensitivity on the part of the care professional. As many people in residential care settings experience cognitive decline, discussions should be continuous to keep the wishes of the resident up to date, be they related to their current situation or future care.

Meetings between residents, their families, and care professionals not only offer confidence in the services provided and transparency of the unfolding process, but also deliver much needed support for all parties who may be going through one of the most challenging experiences of their lifetime.

These circumstances can be hard to approach for a care professional, but adhering to a range of key principles can help create a trusting, supportive environment for the resident, their loved ones, and those providing their care.

Approaching difficult conversations
Depending on the circumstances of the resident, a care professional may need to approach a difficult subject very soon after their arrival, or alternatively, it may be some duration into their residency before a conversation is required.

The priority when first introducing a resident into care is to develop trust in the expertise and experience of the care staff to ensure the relationship will be productive, and difficult conversations can be facilitated as they arise. This relationship can be developed with an honest, transparent discussion of the resident’s circumstances and needs, and may commence at the pre-assessment stage and continue through assessment, into admission. This can then develop over time, depending on the needs of the resident.

Developing trust between the care provider, the resident, and their loved ones is hugely important. When someone living with dementia goes into residential or nursing care, they have complex needs which require flexible support. Care staff need to consider how they can demonstrate their experience, knowledge, and compassion as this is key to sustaining a productive, ongoing relationship.

Involving residents and key stakeholders
Residents and key stakeholders, such as family members, must be fully involved in a care plan to achieve person-centred, holistic care. Developing a care plan involves difficult conversations that residents and their loved ones may find distressing, but they are necessary to agreeing a suitable care plan that builds confidence in the care provider.

As people living with dementia will experience cognitive decline, this must be considered in the conversations that take place. These conversations must take place as soon as possible while the resident is capable of participating in the discussion and specifying their wishes. Direct conversations with the resident are the priority, but including key stakeholders in the process is key to avoiding any misunderstanding, and enabling the resident’s loved ones to be comfortable with the process arranged with the resident themself.

In the early stages of someone’s care, honesty and transparency are paramount in building trust in care professionals, and ensuring that the resident and their loved ones are clear on all circumstances and confident in the quality of care being delivered.

When is the best time to approach a difficult subject?
To determine the best time to start a difficult conversation,it’s important for care providers to communicate with the resident and their loved ones. Although such conversations may be time sensitive, where possible the care professional should negotiate a comfortable time to have such a discussion. Taking the time to do so sensitively will further strengthen the trust in the relationship, and make it as easy as possible for the resident and their family to face any difficult subjects.

If such sensitivity and care is not taken when approaching a difficult subject, the willingness to participate from the resident or their family may be affected, and the relationship may be damaged.

Taking care to find the best moment to approach a subject can be difficult, but approaching at the wrong time can compromise a resident’s willingness to engage, which can create more problems for the process. A resident and their family may experience pressure from other concerns or responsibilities, and pressing a further concern at the wrong time could be very distressing. Communication with residents and their families where possible is crucial and could involve arranging time a few days later as this can make a conversation more productive.

Of course, some conversations are more urgent than others, and where urgent action is needed, a care professional may need to approach a distressing subject at an inconvenient time. This is where a well established, trusting, and transparent relationship with a resident and key stakeholders is helpful, as they will be confident in the necessity of the conversation, and be more willing to engage.

Preparing for a difficult conversation
The first step of approaching a difficult conversation is to ensure that everyone involved is capable of participating and understanding. Although it may be an uncomfortable topic, it is vital that the participants are willing and able to reflect fully on the circumstances. This of course can be difficult for people living with dementia, particularly if they are fairly developed in their journey.

Preparing to make the process as hassle free as possible is a crucial step for care providers. It is important to have all relevant information available, and the outcome of the discussion should be considered to ensure the care provider is confident in how the conversation will go.

It’s important to consider that some people may not be initially willing to engage in the discussion, and it’s therefore crucial to be as accessible as possible for further discussions, and to provide information to help process the conversation.

After the initial conversation, ask for feedback from the resident and their loved ones. It may be necessary to have follow up conversations with written reports, but keeping the process as simple and hassle free as possible will help residents and their families feel more comfortable with the process.

Being easily accessible for follow up discussions or questions will reduce pressure and give time for information to be digested. Information booklets are a great tool which can be provided to help residents and families better understand the situation at hand. Secure a new date in the diary if the participants are not engaging in the first discussion, and make it clear that the care provider is available when they are ready.

Who should approach?
Not every care professional is ready to approach a difficult conversation, and the care provider needs to be confident in the abilities and experience of the person tasked with handling such a discussion before it commences. That individual must be able to communicate the issue, explore options, and support the resident and their loved ones through the situation, as well as be available for follow up conversations.

This is a skill to be developed, and does not come naturally to everyone. Developing this skill in care professionals should form part of an ongoing professional development plan, and be explored through supervision and reflective practice. Coaching care professionals through this process can help them develop the skills needed to approach difficult conversations.

We know that difficult conversations will be distressing for residents and their families, and providing them with the right support is the priority. However, do not forget that the professional facilitating the conversation may also need support. Take time to debrief whoever has approached the conversation and ensure they feel comfortable and confident in their ability. Signpost mental health support if necessary and catch up again after further discussions take place.

Obstacles to expect
Refusal or delay of the conversation: Often, families are not emotionally prepared to face the reality of the resident’s condition, and cognitive decline can be deeply distressing. Postponing or avoiding the conversation is a natural reaction, but for the wellbeing of the resident it is paramount to find a solution sooner rather than later.

Having an open culture and skilled team will make it easier for residents and their families to approach difficult situations, as they can be confident in the abilities of those delivering the care. The strong skill set of the care team will allow them to approach the subject, and explain the benefits of recognising important information sooner rather than later.

Staff skill: As explained earlier, not every care professional is skilled enough to approach difficult conversations, and all require support through a professional development process to reach the required level of confidence.

People that work in care are compassionate and supportive, and can be discouraged from delivering bad news in a desire to reduce pressure on the resident or their family. However, delaying important decisions can lead to greater complications, and approaching the subject at the right time is important for the resident’s wellbeing.

This issue can be avoided through staff training. During induction, the importance of approaching difficult subjects at the right time should be made clear and reiterated during supervision, appraisal, and quality audit processes to ensure that any issues are appropriately approached and in a timely manner.

Staff shortage: The care industry suffers significantly from a clinical staff shortage, and overstretched services may not always have experienced staff available for difficult conversations. Care homes must be vigilant of the quality of communication between professionals, residents, and their families to ensure that difficult conversations are faced in sufficient time, and that the quality of those discussions are proportionate to the circumstances. Ensure that anyone approaching a resident or their family for a difficult conversation is confident in their ability, and has the resources and support in place to deliver the correct information in a compassionate, appropriate way.

Summary
Everyone living with dementia that is admitted into residential or nursing care settings has unique needs, and difficult conversations often need to be had with residents and key stakeholders. There are several potential obstacles, but by having sufficiently trained and experienced staff and upholding key principles, care providers can make the process as easy as possible and avoid any unnecessary distress.

A difficult conversation should not be avoided. Communicate with the resident and their family to find a suitable time to have the discussion, but ensure that the subject is not abandoned to avoid creating a more severe situation for the resident.

Select a sufficiently trained and experienced professional to lead the discussion and liaise with the resident and their family. Not all care professionals are ready to take on this responsibility, and an insufficiently prepared professional may end up causing unnecessary distress for the resident or their loved ones.

Overall, care professionals should endeavour from the earliest opportunity to instil trust and confidence in the abilities of their services, and communicate effectively with the resident and their family to make it easier for all parties when the time comes for a difficult conversation to be had.

It is never easy to approach difficult conversations in a care scenario, but following these steps can reduce the pressure on the resident, their loved ones, and the professionals delivering care.