Impact of disclosure of a dementia diagnosis on uptake of support services: A pilot study exploring a post-traumatic stress approach

Abstract

Background

At time of diagnosis, people with dementia and their carers can access support services to help them to plan for their future care needs, but often they do not engage with these services. It is not clear why this occurs but a potential explanation explored in this paper is that disclosure of a dementia diagnosis is an overwhelming and highly stressful event that may lead to behavioural avoidance in the manner of post-traumatic stress. In this study we use a post-traumatic stress screening tool to determine whether being diagnosed with dementia shares some qualitative similarities with post-traumatic stress disorder and explore whether this is associated with a reduced likelihood to engage support services following diagnosis.

Method

We conducted a small pilot study through the local memory clinic with eight people with dementia and 11 carers returning surveys. Participants completed the Impact of Events Scale-Revised, a validated post-traumatic stress disorder screening tool, and also provided information regarding their experience of the diagnosis and subsequent use of support services.

Results

One person with dementia and two carers had scores on the Impact of Events Scale-Revised indicating a probable diagnosis of post-traumatic stress disorder and two people with dementia and two carers scored within the range of clinical concern. The average Impact of Events Scale-Revised score of those who had taken-up a referral to home support was significantly lower than those who had not.

Conclusion

A dementia diagnosis can be associated with symptoms that are consistent with post-traumatic stress, which in turn may affect engagement with support services.

Keywords

dementia carer health dementia diagnosis uptake of support services post-traumatic stress

It is expected that the number of people living with dementia will increase from 46.8 million people worldwide to 131.5 million in 2050 (Prince et al., 2015), and the incidence of dementia in Australia will increase three-fold over that time (Australian Institute of Health and Welfare (AIHW), 2012). Once a person is diagnosed with dementia in Australia, a range of support services are made available to the person and their families. The services offered vary according to need, circumstance and location with both national and state-based services available to assist people with symptom management, planning for the future and maintaining functional independence in the home. The Cognitive Dementia and Memory Service (CDAMS) offers dementia diagnostic and referral services throughout the state of Victoria that actively refer people diagnosed with neurodegenerative illness into support programs, legal advice, carer support and education programs.

Anecdotally it has been suggested that referrals made through the CDAMS are often not utilised, and this reflects the international experience at both the time of diagnosis (Bunn et al., 2012; Brodaty, Thomson, Thompson, & Fine, 2005) and later in the illness (Phillipson, Jones, & Magee, 2014). The reasons for this under-use are unclear but it appears independent from objective need and is likely related to a confluence of patient, caregiver and systemic factors (Markle-Reid & Browne, 2001). In this paper we examine the emotional impact of being diagnosed with dementia on the person and their families, and explore whether symptoms consistent with post-traumatic stress (PTS) could underlie the reluctance of those affected by dementia to engage with services.

Being diagnosed with dementia can be a traumatic experience for the person diagnosed particularly as it is a terminal progressive illness with no cure and few effective treatments available. Beard (2004) noted that the disclosure of dementia represented a turning point; once a person is diagnosed with dementia they enter a ‘high-risk zone’ for paternalistic attitudes and stigmatisation from others (Iliffe & Manthorpe, 2004). There is apprehension about how others will view their diagnosis and a fear of social embarrassment that can lead to isolation and hyper-vigilance (Harman & Clare, 2006; Langdon, Eagle, & Warner, 2007). A dementia diagnosis can also lead to anxiety and depression (Carpenter et al., 2008; Mormont, de Fays, & Jamart, 2012) and an increased risk of suicide (Erlangsen, Zarit, & Conwell, 2008). These outcomes are more likely in the absence of adequate social support and when disclosure practices do not align with the wishes of the person with dementia (Pratt & Wilkinson, 2003).

A dementia diagnosis also greatly impacts families who will have increasing responsibility for the care and decision making of the person with dementia as their symptoms progress. Some carers report relief and validation following a dementia diagnosis, whereas others report shock, anger and embarrassment (Connell, Boise, Stuckley, Holmes, & Hudson, 2004). A quarter of caregivers experienced clinically significant anxiety (Cooper, Balamurali, & Livingstone, 2007) and up to 68% of carers report depressive symptoms following the diagnosis (Laakonen et al., 2008a, 2008b). In caring for someone with dementia positive aspects including relationship strengthening, and the rewarding, fulfilling and gratifying aspects were identified alongside the negative aspects of the role including that it could be difficult, exhausting, demanding, stressful, frustrating and depressing (Jones, Mackell, Berthet, & Knox, 2010).

The delivery of a dementia diagnosis can evoke distress for the person and their family (Pratt & Wilkinson, 2003) and additionally the experience of attending a memory clinic where a diagnosis might be made ‘may be shocking or frightening’ in and of itself (Bunn et al., 2012, p. 7). The disclosure process can be confusing, traumatic and lengthy (Beattie, Daker-White, & Gillard, 2004) and the use of some technical terminology can result in instinctive negative emotional responses (Langdon et al., 2007). Dissatisfaction can arise for the person with dementia if the disclosure is directed primarily at their family member (Karnieli-Miller, Werner, Aharon-Peretz, Sinoff, & Eidelman, 2012). Carers can also find the disclosure of diagnosis problematic and may want information about dementia at the time of diagnosis rather than as the need arises (Wald, Fahy, Walker, & Livingstone, 2003). In one study only 6% of carers report having had such discussions (Laakkonen et al., 2008a, 2008b). Karnieli-Miller et al. (2012) found that carers were dissatisfied with the lack of information and follow-up processes and with the lack of empathy and support provided at the time of the diagnosis.

The emotional symptoms in people with dementia and their carers following diagnosis share some qualitative similarities with post-traumatic stress disorder (PTSD), an Axis I anxiety disorder in the DSM 5 (American Psychiatric Association, 2013). PTSD is a complex response to a traumatic event with debilitating emotional and behavioural responses broadly categorised as intrusive thoughts, avoidance, or hyperarousal (American Psychiatric Association, 2013). PTSD is increasingly regarded as a risk factor for dementia (Flatt, Gilsanz, Quesenberry, Albers, & Whitmer, 2018), and several authors have explored post-traumatic stress (PTS) in carers of people with dementia (Ulstein, Wyller, & Engedal, 2008) and as a response to disclosure of amyloid status (Wake et al., 2018). However to our knowledge this paper is the first in the dementia literature to examine PTS as a response to a dementia diagnosis. This approach does have some precedence as a response to a serious medical diagnosis however (Moye & Rouse, 2014) with work demonstrating that reactions to cancer diagnosis can parallel the key symptoms of PTS (Abbey, Thompson, Hickish, & Heathcote, 2015; Cordova, Riba, & Spiegel, 2017). It is not suggested that people will develop diagnosable PTSD as a response to a dementia diagnosis, but it is possible that the emotional and psychological impact of a diagnosis could lead to a qualitatively similar response, which is being referred to as PTS, that may share similar behavioural outcomes.

Key to inferring PTS is the identification of a defined stressor. The disclosure of a diagnosis of dementia can be viewed as such a stressor, especially given that dementia has been described as a highly feared diagnosis by older adults (Bond & Corner, 2001). Aminzadeh, Byszewski, Molnar, and Eisner (2007) found that following diagnosis an initial lack of insight or active denial may be present to try to limit the emotional impact. An acute grief reaction and emotional crisis may follow in response to actual and anticipated losses associated with the diagnosis before, finally, a period where positive coping responses emerge to maximise outcomes. Following a dementia diagnosis people often describe a ‘loss of self’ and fears about a loss of control and wellbeing (Moniz-Cook, Manthorpe, Carr, Gibson, & Vernooij-Dassen, 2006). Similarly, loss features in the changing roles for both the person with dementia and carers (Robinson, Clare, & Evans, 2005). Some people with dementia (and their families) may act to preserve their pre-dementia diagnosis identity while at the same time trying to adjust to the diagnosis; some may seek new information about the diagnosis, while others may reject any information (Bunn et al., 2012). Varied responses will likely affect subsequent health seeking behaviours and treatment decisions (Bland, Newman, & Orn, 1997).

People with dementia and their families frequently do not take up referrals or link in with supports at the time of diagnosis which may increase burden and make later stages of dementia more difficult to navigate (Aminzadeh et al., 2007; Bamford et al., 2004; Brodaty et al., 2005; Bunn et al., 2012). Key models explaining resource utilisation in dementia explain only a small percentage of the variance (Markle-Reid & Browne, 2001) indicating that other factors may exist. In this study we suggest that people newly diagnosed with dementia and their families may be exhibiting core symptoms associated with PTS particularly avoidance which may affect their ability to process information about support services (Aminzadeh et al., 2007) and subsequent decision making. It is also possible that the other key symptoms of PTSD, hyperarousal and intrusion (American Psychiatric Association, 2013) may further decrease the uptake of referrals to support services (Brodaty et al., 2005; Bunn et al., 2012). Alternatively, symptoms of PTS may develop in those who for a number of reasons have refrained from taking up support services.

Method

Participants

We provided 100 survey packs to clients of the local CDAMS and received responses from eight people diagnosed with dementia (4 females and 4 males; M age = 78.13 years, SD = 12.16) and 11 family members/carers (8 females and 3 males; M age = 68.45 years, SD = 9.48). While we do not have the specific Mini-Mental State Examination (MMSE) scores of people diagnosed in this group, people attending CDAMS are typically earlier in the disease process than in other settings. Internal data indicate that the average MMSE of people attending this CDAMS clinic was 26.

Materials

Questionnaire packs included the relevant survey (person with dementia or family member), cover letter, plain language statement for implied informed consent, and a self-addressed envelope. Included in this mail out were the following measures and items:

The Impact of Events scale-Revised (IES-R, Weiss, 2007; Weiss & Marmar, 1997) is a reliable and valid PTS screening tool with 22 items comprising three subscales: avoidance, intrusion and hyperarousal. Participants were asked to consider the disclosure of dementia diagnosis as the salient stressor.

A custom designed eight item survey to better understand elements of the experience of disclosure of dementia diagnosis was included. Items were related to effective delivery of a diagnosis based on best practices (e.g., Alzheimer’s Association, 2015; Guideline Adaptation Committee, 2016; Perry et al., 2010; Zaleta & Carpenter, 2010). One item ‘I found the experience of diagnosis overwhelming’ indicated negative experience. The items are listed in Table S1 in the Supplementary materials.

A list of various support services that were commonly recommended in CDAMS assessments was provided. These included General Practitioner, Dementia Australia, Home Support, Counselling, Carer Support, Advance Care Planning and Medication. Participants were asked to note if the referral had been offered and whether they either planned to or had already taken up the referral.

Respondents provided demographic details about age, gender, educational level, specific dementia diagnosis, and an estimate of the person with dementia’s memory function with five options ranging from ‘poor’ to ‘excellent’. Carers were asked to also note their relationship to the person with dementia, the level of care provided and when they first noticed dementia symptoms in their family member.

Procedure

All study procedures were approved by the participating institution and university human research ethics committees. People diagnosed with dementia within six months and a nominated family member/carer were independently mailed a questionnaire pack. Two weeks following the initial mail out, participants received a reminder letter in an effort to increase response rates. As the responses were anonymous to the research team, explicit consent was not required by the Human Research Ethics Committee, and the return of completed surveys indicated implied consent. If a participant could follow the instructions to complete and return the completed survey it was determined that they demonstrated sufficient capacity to consent to participate in the study balanced against the low level of risk that participation involved. Participants were provided with details of support services to contact if required. The questionnaires were mailed out in blocks based on the memory clinic’s capacity to do so. All identifying information was maintained in the memory clinic and was not revealed to the external collaborators.

Results

Post-traumatic stress symptoms (IES-R)

Scores on the IES-R (see Table 1) indicate that one person with dementia and two carers met the criteria for a probable diagnosis of PTSD, and a further two carers and people with dementia had IES-R scores that indicated clinically concerning PTS symptoms according to standing criteria (Weiss, 2007). On average, people with dementia score high on the avoidance subscale while family members/carers scored highest on the intrusion subscale.

Table 1.

IES-R scores for persons with dementia (n = 8) and family members/carers (n = 11).

	Participant IES-R sum scores
	Person with dementia	Family members/carers
	M (SD)	M (SD)
IES-R intrusion (8 items)	6.38 (9.75)	8.91 (7.29)
IES-R avoidance (8 items)	9.75 (8.23)	6.73 (6.83)
IES-R hyperarousal (6 items)	4.25 (1.98)	3.82 (4.88)
IES-R total (22 items)	20.38 (12.06)	19.45 (17.07)
Probable diagnosis PTSD (n)	1	2
Clinically concerning PTS symptoms (n)	2	2
No concern (n)	5	7

PTS symptoms and the experience of a dementia diagnosis

We examined correlations between scores on the IES-R and characteristics of how the dementia diagnosis was disclosed (see Tables 2 and 3) as a hypothesis generating exercise for future work as the small sample size lacks statistical power to draw meaningful conclusions. For people diagnosed with dementia, IES-R intrusion was positively correlated with being ‘overwhelmed by the diagnosis’ and negatively correlated with ‘relief at diagnosis’. IES-R hyperarousal was negatively correlated with ‘heard about support’. For family members/carers, IES-R avoidance was correlated with being ‘overwhelmed by the diagnosis’ and negatively with ‘relief at diagnosis’, and ‘able to ask questions’.

Table 2.

Correlation matrix: inter-correlations between study variables: individuals with dementia (n = 8; r (95%CI)).

	1	2	3	4	5	6	7	8	9	10	11	12	13
(1) Age	1.00
(2) IES-R intrusion	−0.85 (−0.97: −0.36)	1.00
(3) IES-R avoidance	−0.67 (−0.93: 0.07)	0.63 (−0.13: 0.92)	1.00
(4) IES-R hyperarousal	−0.21 (−0.8: 0.58)	0.39 (−0.43: 0.86)	−0.32 (−0.84: 0.5)	1.00
(5) IES-R total	−0.84 (−0.97: −0.33)	0.91 (0.57: 0.98)	0.89 (0.5: 0.98)	0.11 (−0.64: 0.76)	1.00
(6) Diagnosis timely	−0.49 (−0.89: 0.33)	0.45 (−0.37: 0.88)	0.67 (−0.07: 0.93)	−0.14 (−0.77: 0.63)	0.62 (−0.15: 0.92)	1.00
(7) Diagnosis clear	−0.02 (−0.71: 0.69)	0.21 (−0.58: 0.8)	0.36 (−0.46: 0.85)	−0.15 (−0.77: 0.62)	0.31 (−0.5: 0.83)	0.31 (−0.5: 0.83)	1.00
(8) Able to ask questions	0.67 (−0.07: 0.93)	−0.56 (−0.91: 0.24)	−0.62 (−0.92: 0.15)	0.14 (−0.63: 0.77)	−0.63 (−0.92: 0.13)	−0.36 (−0.85: 0.46)	0.38 (−0.44: 0.86)	1.00
(9) Support options clear	0.51 (−0.3: 0.89)	−0.53 (−0.9: 0.28)	−0.33 (−0.84: 0.49)	−0.02 (−0.72: 0.69)	−0.45 (−0.88: 0.37)	−0.48 (−0.89: 0.34)	0.42 (−0.4: 0.87)	0.8 (0.22: 0.96)	1.00
(10) Diag. overwhelming	−0.63 (−0.92: 0.13)	0.81 (0.25: 0.96)	0.46 (−0.36: 0.88)	0.45 (−0.37: 0.88)	0.72 (0.03: 0.95)	−0.01 (−0.71: 0.7)	−0.03 (−0.72: 0.69)	−0.6 (−0.92: 0.18)	−0.35 (−0.85: 0.47)	1.00
(11) Diagnosis was a relief	0.65 (−0.1: 0.93)	−0.8 (−0.96: −0.22)	−0.44 (−0.87: 0.38)	−0.39 (−0.86: 0.43)	−0.69 (−0.94: 0.03)	0.12 (−0.64: 0.76)	0.04 (−0.68: 0.72)	0.54 (−0.27: 0.9)	0.29 (−0.52: 0.83)	−0.95 (−0.99: −0.74)	1.00
(12) Concerns addressed	−0.33 (−0.84: 0.49)	0.21 (−0.58: 0.8)	0.51 (−0.3: 0.89)	−0.24 (−0.81: 0.56)	0.39 (−0.43: 0.86)	0.8 (0.22: 0.96)	0.58 (−0.21: 0.91)	0.12 (−0.64: 0.76)	0.02 (−0.69: 0.71)	−0.32 (−0.84: 0.5)	0.29 (−0.52: 0.83)	1.00
(13) Heard about support	−0.13 (−0.76: 0.63)	−0.27 (−0.82: 0.54)	0.46 (−0.36: 0.88)	−0.8 (−0.96: −0.22)	0.07 (−0.67: 0.74)	0.19 (−0.59: 0.79)	−0.07 (−0.74: 0.67)	−0.36 (−0.85: 0.46)	0.03 (−0.69: 0.72)	−0.23 (−0.8: 0.57)	0.21 (−0.58: 0.8)	0.23 (−0.57: 0.8)	1.00

Table 3.

Correlation matrix: inter-correlations between study variables: family members/carers (n = 11; r (95%CI)).

	1	2	3	4	5	6	7	8	9	10	11	12	13
(1) Age	1.00
(2) IES-R intrusion	0.04 (−0.57: 0.62)	1.00
(3) IES-R avoidance	0.32 (−0.35: 0.77)	0.73 (0.23: 0.92)	1.00
(4) IES-R hyperarousal	0.18 (−0.47: 0.7)	0.74 (0.25: 0.93)	0.65 (0.08: 0.9)	1.00
(5) IES-R total	0.2 (−0.45: 0.71)	0.93 (0.75: 0.98)	0.9 (0.65: 0.97)	0.86 (0.54: 0.96)	1.00
(6) Diagnosis timely	−0.16 (−0.69: 0.49)	−0.33 (−0.78: 0.34)	0.61 (0.02: 0.89)	−0.51 (−0.85: 0.13)	−0.53 (−0.86: 0.1)	1.00
(7) Diagnosis clear	−0.4 (−0.81: 0.26)	−0.08 (−0.65: 0.55)	−0.57 (−0.87: 0.05)	−0.18 (−0.7: 0.47)	−0.31 (−0.77: 0.36)	0.83 (0.46: 0.95)	1.00
(8) Able to ask questions	−0.27 (−0.75: 0.39)	−0.38 (−0.8: 0.28)	−0.74 (−0.93: −0.25)	−0.26 (−0.74: 0.4)	−0.53 (−0.86: 0.1)	0.82 (0.43: 0.95)	0.9 (0.65: 0.97)	1.00
(9) Support options clear	0.15 (−0.49: 0.69)	−0.42 (−0.81: 0.24)	−0.48 (−0.84: 0.17)	−0.58 (−0.88: 0.03)	−0.54 (−0.86: 0.09)	0.49 (−0.16: 0.84)	0.27 (−0.39: 0.75)	0.24 (−0.42: 0.73)	1.00
(10) Diag. overwhelming	−0.07 (−0.64: 0.55)	0.49 (−0.16: 0.84)	0.67 (0.12: 0.91)	0.31 (−0.36: 0.77)	0.56 (−0.06: 0.87)	−0.48 (−0.84: 0.17)	−0.35 (−0.79: 0.32)	−0.47 (−0.83: 0.18)	−0.66 (−0.9: −0.1)	1.00
(11) Diagnosis was a relief	0.18 (−0.47: 0.7)	−0.35 (−0.79: 0.32)	−0.61 (−0.89: −0.02)	−0.32 (−0.77: 0.35)	−0.48 (−0.84: 0.17)	0.78 (0.34: 0.94)	0.71 (0.19: 0.92)	0.85 (0.51: 0.96)	0.3 (−0.37: 0.76)	−0.4 (−0.81: 0.26)	1.00
(12) Concerns addressed	0.24 (−0.42: 0.73)	−0.36 (−0.79: 0.31)	−0.59 (−0.88: 0.02)	−0.51 (−0.85: 0.13)	−0.54 (−0.86: 0.09)	0.85 (0.51: 0.96)	0.61 (0.02: 0.89)	0.69 (0.15: 0.91)	0.59 (−0.02: 0.88)	−0.54 (−0.86: 0.09)	0.9 (0.65: 0.97)	1.00
(13) Heard about support	0.13 (−0.51: 0.68)	−0.16 (−0.69: 0.49)	−0.36 (−0.79: 0.31)	−0.53 (−0.86: 0.1)	−0.36 (−0.79: 0.31)	0.62 (0.03: 0.89)	0.32 (−0.35: 0.77)	0.21 (−0.45: 0.72)	0.86 (0.54: 0.96)	−0.61 (−0.89: −0.02)	0.31 (−0.36: 0.77)	0.68 (0.14: 0.91)	1.00

Uptake of support services

The uptake of support services by people with dementia and their carers within six months of diagnosis is shown in Table 4. Support through primary care physicians and medication were the most commonly used for both groups with comparatively less uptake of home support, carer support and advance care planning for people with dementia, and information/education and carer support for family members/carers. It is important to note that whilst people with dementia and their carers would have been made aware of the range of services described in Table 2 at the time of diagnosis, not all received a referral for each if these were not yet needed (e.g. home support) or agreed to.

Table 4.

Referrals to support services offered and taken-up.

	Person with dementia			Family member/carer
Support service	Referrals offered	Referrals taken-up	% Taken-up	Referrals offered	Referrals taken-up	% Taken-up
General practitioner	8	7	87.5	9	6	67.0
Medication	8	5	62.5	9	6	67.0
Information/education	6	3	50.0	10	3	30.0
Counselling	6	3	50.0	6	4	67.0
Home support	5	2	40.0	8	4	50.0
Carer support	5	1	20.0	7	2	28.6
Adv. care planning	7	1	14.3	6	3	50.0

Impact of PTS symptoms on uptake of support services

The small sample size limits our ability to infer too much meaning from these results however we were interested to see if we could identify any preliminary differences according to IES-R scores. People with higher total IES-R scores were less likely to have taken up support through their GP, carer support services and advance care planning service than those with lower IES-R scores although this was only a significant difference for home support. On average, both people with dementia and carers, who had not taken up a referral for home support had higher IES-R scores (M = 24.77, SD = 14.70) than those who had (M = 9.17, SD = 8.31), t(17) = 2.41, p = .028, Cohen’s d = 1.31. The data suggest those with higher total IES-R scores are more likely to take up services for information and education, counselling, and medication than those with lower IES-R scores. An alternate explanation could be that uptake of support services may have impacted positively on stress levels.

Discussion

The results from this pilot study suggest that the delivery of a dementia diagnosis can lead to significant emotional distress that is consistent with PTS in some people diagnosed with dementia and their carers. One person with dementia and two family members/carers had scores meeting the criteria for probable diagnosis of PTSD (Weiss, 2007). Some PTS dimensions correlated with characteristics of the disclosure of dementia diagnosis and these associations can be used to direct future research. Also, while tentative, current results suggest PTS symptoms following the disclosure of a dementia diagnosis may prompt uptake of referrals for immediate information to help understand the diagnosis, over referrals to support services that involve care options (e.g., home support, carer’s support, advanced care planning, and visit to GP). For those with greater stress, satisfying information needs may enable them to make sense of and process the diagnosis before they can then consider what practical help they may seek.

This sequence resembles the ‘rule of threes’ (Wald et al., 2003) that suggests information is optimally disseminated according to several phases following dementia diagnosis. At diagnosis, basic information about symptoms and medications should be given. An early follow-up should include information about support services, the course of dementia and how to handle any crisis. A later follow-up contact is best for information about support groups and legal and financial topics, while at an even later stage, information is often required about the impact of the illness on carers, and psychological and complementary therapies. An alternative explanation for the pattern of seeking information over support might also reflect the desire or a preference to adapt to the diagnosis (at least initially) privately over the uptake of more public support (e.g., Bunn et al., 2012).

These are correlational findings and cannot indicate a cause and effect, although the results offer fertile ground for further research that can test causal linkages between how a diagnosis is disclosed and response to diagnosis, and the latter’s relationship with uptake of support services. Given the small sample size and recruitment of participants at a single site, and assessment at a single time-point, extrapolation of these findings is complicated. It is also a risk that the sample is not representative of the wider population. It is difficult to infer what impact this would have had on the results, given that avoidant behaviour, or resistance to a diagnosis would likely reduce a person’s participation in research. Results indicate that people may show a pattern of responses following diagnosis consistent with PTS and this should be considered in the delivery of the diagnosis and subsequent follow-up. Larger scale work is needed to determine whether we can identify those prone to PTS outcomes; how best to assist them at the time of diagnosis; and when optimally support should be offered. Future research should also differentiate the types of advance care planning options being investigated. Terms like future planning and advance planning are often used interchangeably whereas ‘advance care plans’ are specific formal written documents about future health care wishes. For example, it has been noted in the clinic featured in this study that people will often follow through on appointment of Enduring Powers of Attorney but are less likely to complete a formal advance care plan.

Whatever the reasons for refraining from service use, people can have a strong emotional reaction to being diagnosed, and those delivering the diagnosis need to be mindful of this. In addition, the provision of a follow-up contact could be utilised to monitor wellbeing and whether supports are needed. This further contact may also lead to additional uptake of services. The study findings indicate there is some value in considering PTS as a factor impacting people after a dementia diagnosis, and provides some preliminary indication that this in turn, may affect service use. We are not suggesting that a PTS model replace other models to explain underutilisation of support services, rather that the psychological impact of the diagnosis on the person diagnosed and their families be more prominent in models seeking to understand factors that predict service use.

Supplemental Material

Supplemental material for Impact of disclosure of a dementia diagnosis on uptake of support services: A pilot study exploring a post-traumatic stress approach

Supplemental Material for Impact of disclosure of a dementia diagnosis on uptake of support services: A pilot study exploring a post-traumatic stress approach by Annette Dunham, David Mellor, Elizabeth Rand, Marita McCabe and Matthew Lewis in Dementia

Footnotes

Acknowledgements

We would like to thank the individuals newly diagnosed with dementia, and their carers who participated in this study.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval

All study procedures were approved by the participating institution and university human research ethics committees.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors receieved a seeding grant for this research from the School of Psychology, Deakin University.

Supplementary material

Supplementary material is available for this article online.

Annette Dunham is a lecturer in Health Leadership at the University of Auckland. Her research interests include a focus on provider organizational and team cultures that most effectively support patient involvement and self-management within primary health care.

David Mellor is a professor in the School of Psychology at Deakin University in Melbourne, Australia. His recent research has focused on staff training in the residential aged care setting to improve the detection and management of depression among residents and the non-pharmacological management of the behavioral and psychological problems exhibited by residents with dementia.

Elizabeth Rand is an occupational therapist and Neuroscientist with a special interest in cognition in older age. She is the manager of the Cognitive Dementia and Memory Service at Alfred Health Victoria Australia, a multidisciplinary assessment and diagnostic service for people concerned about changes in their cognition.

Marita McCabe is a research professor and Team Leader of the Health and Ageing Research Group at Swinburne University. Over the last 20 years she has conducted research on the mental health and well-being of older people in community and residential care.

Matthew Lewis researches ageing, cognition, dementia, cardiovascular disease and mental health. He was formerly a research coordinator in Aged Psychiatry at Alfred health, but has worked in clinical, academic and industry research roles. He is currently a Research Fellow in Mental Health and Primary Care in the Department of General Practice at the University of Melbourne. Dr Lewis works within multidisciplinary teams to better understand the interactions between health and cognition and the delivery of services to address these issues.

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