Facilitating independence: The benefits of a post-diagnostic support project for people with dementia

Kelly, Fiona; Innes, Anthea

doi:10.1177/1471301214520780

Cited by 34 publications

(29 citation statements)

References 16 publications

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“…Giving those diagnosed written information on social care and voluntary services could be best practice on the part of DMP (Lecouturier et al, ) and may be regarded by some GPs as a sufficient response to social need (White et al, ). In contrast, in this study, two participants reported being given inappropriate advice pamphlets aimed at carers, a finding that echoes other research (Kelly & Innes, ; Mountain & Craig, ), and which reflects a potential structural oppression whereby people with dementia are underestimated and perceived as lesser or diminished. Potential strengths and capabilities, often intact at early stages (Yale, ), are ignored.…”

Section: Discussionsupporting

confidence: 67%

“…The diagnostic process should not be a one‐off event (Dhedhi et al, ; Aminzadeh, Byszewski, Molnar, & Eisner, ; Koch & Iliffe, ): there should be more than one appointment to discuss diagnosis and enable effective care planning (Kelly & Innes, ). This could involve the outlining of appropriate support services that community and voluntary agencies provide.…”

Section: Discussionmentioning

confidence: 99%

“…The use of specialist services such as memory clinics is regarded as being more effective in providing effective post‐diagnostic support (Kelly & Innes, ; Prince et al, ; Robinson, Tang, & Taylor, ). Diagnosed individuals view services as valuable if they are able to signpost on to community support initiatives (Mayrhofer, Mathie, McKeown, Bunn, & Goodman, ).…”

Section: Discussionmentioning

confidence: 99%

“…Diagnosed individuals view services as valuable if they are able to signpost on to community support initiatives (Mayrhofer, Mathie, McKeown, Bunn, & Goodman, ). DMP do not need to fulfil this role: diagnosed individuals appreciate dedicated and sensitive project workers who facilitate referrals to social support (Kelly & Innes, ). What is important is ensuring there is a clear system in place where the referral agent is identified early and appropriate processes activated.…”

Section: Discussionmentioning

confidence: 99%

“…DMP are sometimes perceived as poor communicators lacking empathy (Koehn, Badger, Cohen, McCleary, & Drummond, ). Diagnosed individuals have expressed 'feelings of abandonment or “being sent away” by professionals on receipt of diagnosis’ (Kelly & Innes, :167). One area that could improve relates to how those diagnosed access support services (Manthorpe et al, ).…”

Section: Introductionmentioning

confidence: 99%

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What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan

2020

Health Soc Care Community

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The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory approach, semi‐structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience of diagnosis and also their subsequent group membership. Respondents reported both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between a medical professional and referral to the empowerment group, others being referred by other health professionals or dementia navigators. The study indicates that, due to disorienting feelings, one diagnostic consultation is insufficient to explain both the diagnosis and offer follow‐up support. Therefore, more explicit links to navigators or other services need to be made at the point of diagnosis to prioritise information regarding opportunities for social engagement for those being diagnosed.

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Section: Discussionsupporting

confidence: 67%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan

2020

Health Soc Care Community

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Risk of Suicide Attempt in Patients With Recent Diagnosis of Mild Cognitive Impairment or Dementia

et al. 2021

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IMPORTANCELittle is known about the association between mild cognitive impairment (MCI) and suicide. Most studies have focused on dementia and suicidal behavior, with inconsistent results.OBJECTIVES To examine the association between diagnoses of MCI and dementia and suicide attempt and explore potential psychiatric moderators and to assess whether the association differs based on recency of diagnosis. DESIGN, SETTING, AND PARTICIPANTS This nationwide cohort study integrated 5 national databases from the Department of Veterans Affairs (VA) and Centers for Medicare & Medicaid Services and included all VA medical centers in the US. US veterans 50 years or older with MCI diagnoses at baseline (October 1, 2011, to September 30, 2013) or earlier (October 1, 2007, to September 30, 2011) were propensity matched 1:3 with (1) patients with dementia diagnoses and (2) patients without either diagnosis based on demographic characteristics and the Charlson Comorbidity Index. Diagnoses of MCI or dementia were defined as recent if there were no diagnosis codes before baseline. Data were analyzed from March 16, 2020, to January 15, 2021. MAIN OUTCOMES AND MEASURES Information on suicide attempts through December 31, 2016, provided by the National Suicide Prevention Applications Network (nonfatal) and Mortality Data Repository (fatal). RESULTSThe study population of 147 595 participants included 21 085 patients with MCI, 63 255 with dementia, and 63 255 in the propensity-matched comparison group. Participants had a mean (SD) age of 74.7 (10.3) years, 143 353 (97.1%) were men, 4242 (2.9%) were women, and 127 065 (86.1%) were non-Hispanic White. A total of 138 patients with MCI (0.7%) and 400 patients with dementia (0.6%) attempted suicide during follow-up, compared with 253 patients without MCI or dementia (0.4%). Exploratory analyses revealed that no psychiatric comorbidity moderated the association between MCI or dementia and suicide attempt. After adjustment for demographic details and medical and psychiatric comorbidities, risk of suicide attempt was consistently highest for patients with a recent MCI or dementia diagnosis, with adjusted hazard ratios (HRs) of 1.73 (95% CI, 1.34-2.22; P < .001) for recent MCI and 1.44 (95% CI, 1.17-1.77; P = .001) for recent dementia. Risk associated with prior diagnosis was not significant (HR for prior MCI, 1.03 [95% CI, 0.78-1.36; P = .84]; HR for prior dementia, 1.14 [95% CI, 0.95-1.36; P = .15]).CONCLUSIONS AND RELEVANCE This study found that older adults with recent MCI or dementia diagnoses were at increased risk of attempting suicide. These findings suggest that involvement of supportive services at the time of or soon after diagnoses of MCI or dementia may help mitigate risk of suicide attempts.

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Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort

Horik

Collins

Martyr

et al. 2022

Int J Geriat Psychiatry

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Background: Global initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild-to-moderate dementia receive information and psychosocial interventions to improve their ability to 'live well'. However, it remains unclear to what extent these recommendations are being achieved.Methods: Self-reported information from 1537 people living with dementia and informant-reported information from 1277 carers of people living with dementia was used to quantify receipt of community-based dementia support services, including health and social care services provided by statutory or voluntary-sector organisations, in Britain from 2014 to 2016. Demographic factors associated with differences in receipt of support services were also investigated to identify particularly vulnerable groups of people living with dementia.Results: Both self-and informant reports suggested that approximately 50% of people living with dementia received support services for dementia. Receipt of support services was lower among people living with dementia who are older, female, and have fewer educational qualifications. Receipt of support services also differed according to diagnosis and carer status, but was unrelated to marital status.Conclusions: Limited receipt of dementia support services among people living with dementia in Britain provides a baseline to assess the efficacy of current policy guidelines regarding provision of information and support. Targeted efforts to facilitate receipt of support services among the particularly vulnerable groups identified in the current study could improve the efficacy of dementia support services both in Britain and internationally, and should inform policy development.

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Facilitating independence: The benefits of a post-diagnostic support project for people with dementia

Cited by 34 publications

References 16 publications

What next? Experiences of social support and signposting after a diagnosis of dementia

What next? Experiences of social support and signposting after a diagnosis of dementia

Risk of Suicide Attempt in Patients With Recent Diagnosis of Mild Cognitive Impairment or Dementia

Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort

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