Unmet Needs in Dementia Care After Formal Diagnosis

After a formal dementia diagnosis, there is a significant increase in unmet daily life support needs, according to findings published in BMC Medicine.

Using 2000 to 2018 data from the Health and Retirement Survey, researchers conducted a matched ambidirectional cohort study to examine how a formal dementia diagnosis affects continuity of social support among US adults with potential cognitive impairment. The exposure group (n=1261; mean [SD] age, 76.59 [9.55] years; 62.2% women, 78.7% non-Hispanic White) had a formal dementia diagnosis with data before and after diagnosis, while those in the control group (n=12,604; mean [SD] age, 76.47 [9.42] years; 62.2% women; 78.8% non-Hispanic White) had no diagnosis.

The primary outcome of the study was unmet social support, defined as reporting physical disability without corresponding support. Disability was assessed using basic and instrumental activities of daily living (BADL and IADL). Changes in BADL and IADL were measured using 2 coefficients, step changes (β6) and trend effects (β7). Chi-square tests, two-tailed t-tests, and a multilevel linear regression model were employed for statistical analysis.

Overall, diagnosed participants experienced a significant step increase in unmet IADL support (β6, 0.10; 95% CI, 0.07-0.13), notably in making phone calls (β6, 0.74; 95% CI, 0.16-1.33). There was also a significantly increased trend of unmet IADL support (β7, 0.02; 95% CI, 0.00-0.03) for all participants.

Among Hispanic participants, unmet BADL needs increased significantly (β6, 0.74; 95% CI, 0.03-1.46), primarily driven by unmet needs for eating assistance (β6, 1.58; 95% CI, 0.17-2.99). Black participants showed significant increases in unmet BADL needs for toileting support (β6, 1.52; 95% CI, 0.57-2.47) and for unmet IADL support overall (β6, 0.09; 95% CI, 0.00-0.17). White participants experienced significantly increased unmet IADL support (β6, 0.11; 95% CI, 0.08-0.14), particularly for making phone calls (β6, 0.83; 95% CI, 0.19-1.47).

Women had a significant decrease in unmet BADL needs for getting in and out of bed (β6, –0.55; 95% CI, –1.03 to –0.06), but a significant increase in unmet IADL support needs (β6, 0.08; 95% CI, 0.04-0.11), mainly for making phone calls (β6, 0.96; 95% CI, 0.21-1.71). Among men, unmet BADL support for toileting (β6, 0.78; 95% CI, 0.03-1.53) and unmet IADL support (β6, 0.14; 95% CI, 0.10-0.18) increased significantly.

These unmet needs largely reflect increases in disability that outpaced corresponding social support. Exceptions include unmet toileting support needs among Black participants, driven by increased toileting disability (β6, 0.91; 95% CI, 0.15-1.66), and decreased unmet needs for getting in and out of bed among women, linked to larger declines in disability (β6, –0.28; 95% CI, –0.63 to 0.07) than social support (β6, –0.23; 95% CI, –0.75 to 0.28) for that activity.

Study limitations include self- and proxy-reported data, as well as an interrupted time series method.

“Moving beyond merely documenting increased care needs in dementia, our study uniquely identifies the diagnosis event itself as a critical but currently ineffective transition point in the care continuum,” the authors wrote.

Disclosures: One study author disclosed affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.