A thematic analysis was conducted to explore how partners of people with dementia decide whether to tell family and friends about the diagnosis.
Background to the research
UK government policy over the past decade has championed earlier dementia diagnosis, alongside an ageing population. This has increased the number of spousal family caregivers at an earlier stage in their partner’s illness, where symptoms may be more easily concealable. It is estimated that there are currently 540,000 people caring for a family member with dementia in England, and that one in three people will care for a person with dementia during their lifetime. Spousal family caregivers are at a greater risk of a host of negative physical and psychological outcomes. Disclosure of a partner’s diagnosis to their wider family and social network has risks and potential benefits. Telling others about their partner’s diagnosis may enable practical and emotional support to protect against negative outcomes. However, telling others may go against their partner’s wishes, disrupt long-standing privacy boundaries, or create anxiety around stigma. The research sought to understand the factors that influence a spouse’s decision-making process on whether to disclose or conceal their partner’s dementia diagnosis.
An inductive, reflexive thematic analysis of twelve semi-structured interviews with spousal family caregivers generated three themes, with eight underlying subthemes.
1. Decisional absence - this theme captures situations where a partner did not consider the choice of telling others about their partner's diagnosis.
1.1 Concealability ('covering up for themselves')
The PwD's symptoms were still concealable, which meant the question of whether or not to tell others was not a focus.
|1.2 'I think it's quite obvious'||The PwD's symptoms were considered so obvious, the family caregiver assumed others would know and there was no need to mention it.|
|1.3 The PwD made the decision ('[My partner] felt they [other people] should know.')||The PwD was able to take a lead on the decision to tell, or not tell others, so the family caregiver was guided by this.|
2. Decisional influences - This theme captured the influences behind decision-making around whether to tell others.
|2.1 'It's just a fact'||The way the FCG viewed dementia influenced whether they were likely to tell other people about their partner's diagnosis.|
|2.2 'Spreading the word'||A desire to educate others or advocate, influenced the disclosure decision.|
|2.3 A desire to protect ('Why stir up anxieties when it's not necessary')||The FCG was aware that they, or their partner, may be judged because of the dementia diagnosis, and they wanted to protect against this.|
|2.4 Others' responses ('I can't think of a situation where people weren't helpful and kind')|
The responses the FCG received from other people who were made aware of the diagnosis, influenced their decision to tell or not tell others.
|2.5 Support needs ('It lightens the mood')||The FCG told others because they needed either practical or emotional support to help cope.|
|3. Decisional dilemmas - This theme highlighted the burden of decision-making, through the dilemmas a FCG faced such as balancing out being honest, protecting their partner, getting support, or preserving a pre-dementia identity.||No subthemes were deemed appropriate as there was a myriad of dilemmas that spousal FCGs contended with as part of the disclosure decision-making process (‘I was torn’).|
|*FCG = family caregiver; PwD = person(s) with dementia|
Although the research question focused on decisional influences, analysis showed that disclosure decision-making was not, as assumed, a universal aspect of partners’ lived experience, resulting in the first theme; ‘Decisional absence’. If disclosure decisions were made, they were influenced by several key ‘Decisional influences’. The complexity and evolving nature of decision-making was evidenced through the final theme, ‘Decisional dilemmas’, highlighting the dilemmas that spouses faced throughout their caregiving as they negotiated the burden of competing values. These decisional dilemmas captured decision-making as an aspect of caregiver burden, bridging the decision-making and caregiver burden literature within the dementia field.
The study offered insight into many areas when considering decision-making as an aspect of spousal caregiver burden. It highlighted how partners may inadvertently avoid decision-making altogether, perhaps to counter the potential burden associated with this. Decisional influences were difficult to establish directly from the data, as spouses often described behaviours as opposed to cognitive processes. Indeed, decisions may have been more instinctual, related to former patterns of communication, pre-existing privacy boundaries, previous disclosure experiences, or prevailing societal views. This was in contrast to the rational calculation or cost-benefit analysis, that decision-making models or theories assume. However, it could be inferred that how a partner saw dementia, a wish to advocate, a desire to protect, the influence of others’ responses, and support needs were all key factors that appeared to underpin a decision to conceal or disclose. The third finding was the that of disclosure decision-making as an aspect of caregiver burden, through the decisional dilemmas that partners were in an internal conflict with as they struggled with competing values and interests. This research is the first of its kind to provide a nuanced understanding of spousal disclosure decision-making, and its findings indicate that this aspect of caregiver burden requires further investigation, in order to support spousal caregivers managing these disclosure decisions.
Practically, the research findings have the potential to inform interventions for spousal caregivers of people with dementia, to aid in their consideration of diagnostic disclosure decisions. The finding that spouses sometimes do not perceive themselves as having a decision to make, or struggle to articulate how they make this decision, may influence practical advice to help support spousal caregivers with this decision. This could enable them to be proactive, and facilitate a greater sense of control. The findings from the research also highlight the dilemmas that spousal caregivers face; an acknowledgement of these from the outset, and their potential burden, may be helpful in facilitating adjustment to a caregiving role. Ultimately, the research may help influence the provision of practical support around disclosure itself, such as decisional aids. This could have a positive impact on the wellbeing of both the person with dementia and the spousal caregiver, as they are able to adjust to, and accept, their newly formed identities.