Prevalence and Type of Unmet Needs Experienced by People Living with Dementia

Abstract

Background:

Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home.

Objective:

We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population.

Methods:

This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability.

Results:

The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1–9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%).

Conclusion:

The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Keywords

Alzheimer’s disease dementia measurement unmet needs validity

INTRODUCTION

The numbers of people diagnosed with dementia worldwide is projected to double between 2020 and 2040 [1]. In Australia, over 450,000 people live with dementia [2]. A majority of these people (70% in 2011) are living in the community with the support of informal caregivers and professional care staff [3]. Most people living with dementia express a preference to remain living at home [4, 5]. However, ensuring appropriate support to manage symptoms and maximize quality of life for people with dementia living at home can be challenging [6].

Unmet needs are concerns which an individual perceives they have a need for help. Unmet needs may occur if an individual is not currently receiving any help for an issue, or if the help they are receiving is insufficient. Clinically, assessment of unmet needs can assist health and aged care providers to identify and prioritize the services and support required by an individual with dementia. In a research context, unmet needs assessment can identify the areas in which unmet needs are most common, allowing for the development of targeted interventions, appropriate allocation of resources, and policy changes. Among older adults and people with chronic conditions such as cancer, the extent of unmet needs has been shown to correlate with quality of life, psychological distress, and health services utilization [7 –9]. Unmet needs of people with dementia are associated with higher anxiety, depression and challenging behaviors, and reduced quality of life [10 –12]. Identifying and addressing unmet needs of people with dementia living in the community may reduce some of the burdens experienced by both the person living with dementia and their caregivers and increase the likelihood of living at home for as long as possible [13, 14].

Compared with people with other chronic diseases, relatively little is known about the unmet needs of people with dementia. This may be partly explained by methodological and ethical challenges associated with recruitment of people with dementia to participate in research studies. Researchers may be reluctant to recruit people with dementia due to concerns over capacity to consent, perceived lack of awareness of their symptoms or diagnosis, the potential for distress as a result of participation, and credibility of the data obtained [15, 16]. Due to these challenges, proxy reports (e.g., from a family or professional caregiver) are often used to identify the unmet needs of people with dementia [17, 18]. However, there is increasing recognition that people with dementia are able to accurately express their needs and concerns [19 –21]. The development and validation of instruments to assess capacity to consent [22], along with recommendations and guidelines for appropriately involving people with dementia in research [23] have increased the feasibility and acceptability of recruiting people with cognitive impairment to research studies.

Quantitative studies allow for an examination of the prevalence of different types of unmet needs. This approach allows governments and service providers to identify the areas of support which are commonly reported as unmet, and which may require additional resources or service redesign. However, a recent review [24] identified few studies that assessed unmet needs of people with dementia. Only two of the identified studies asked people with dementia directly about their unmet needs [4, 25], with the remaining studies relying on proxy reports. These studies used a standardized and validated instrument, the Camberwell Assessment of Need for the Elderly (CANE) [26]. This instrument was developed for older adults with any type of mental illness and is administered as a semi-structured interview. Different areas of need, such as food, daytime activities, and mobility are rated as ‘no need’, ‘met need’, or ‘unmet need’ by the administrator. The CANE has been criticized for its lack of specificity in identifying concrete needs [27]. For example, the ‘mobility’ area does not differentiate between needs related to gait difficulties or using public transport. Further, the studies were conducted in the UK and the Netherlands. Given that services and supports available vary substantially across countries, unmet needs of people with dementia should be examined across a broader range of countries.

In this study, we aimed to develop and evaluate a self-report, multidimensional instrument to assess dementia-specific unmet needs, and use that instrument to examine the prevalence of unmet needs among an Australian sample of people with dementia living in the community.

METHODS

Design

Cross-sectional survey of people with dementia. The study was approved by the Hunter New England Health (16/05/18/4.05; 17/07/19/4.06; 180718/4.06) and the University of Newcastle (H-2018-0308) Human Research Ethics Committees.

Participants

People with dementia were eligible to participate if they were aged 18 or older, able to read and write English, had a diagnosis of any type of dementia from a medical professional (general practitioner, geriatrician, psychiatrist, neurologist), were living in the community, and had capacity to provide informed consent. People with pre-dementia diagnoses (e.g., mild cognitive impairment) were excluded. People residing in an aged care facility were not eligible as the instrument was designed to identify unmet needs of people with dementia living in the community.

Recruitment and data collection

Participants were recruited from July 2018 to June 2020. Geriatric clinics (n = 5), respite centers for people with dementia (n = 3), support groups for carers of people with dementia (n = 3), and providers of community aged care services in NSW and Victoria, audited their client lists to identify potentially eligible people. Eligible individuals were provided with a study information pack either in the mail, during their clinic appointment or through a carer who was provided with a pack when attending a group meeting. The geriatricians and aged care provider recorded the sex and age of the person with dementia provided with the study pack in order to assess consent bias. All non-responders mailed a pack were sent a reminder four weeks following mail out of the initial information pack. Additional participants were recruited as part of a larger study through two geriatric clinics and a provider of community aged care services in NSW. These clinics invited potentially eligible individuals to complete a study eligibility screening form. Those meeting inclusion criteria were sent the study pack and a reminder 4 weeks later if required.

Completion of the survey was taken as implied consent. Capacity to consent was assessed using four questions at the start of the survey. Participants were asked to select the correct response from three possible response options (see Supplementary Figure 1). The questions were adapted from the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) which states that prior to use researchers should determine which of the 10 questions are essential to the specific study and prepare relevant responses to each question [28]. In line with the accepted cut-point of 14.5 out of a possible 20 points on the UBACC instrument [28], those who answered at least 3 out of 4 questions correctly were classified as having adequate capacity to consent. The responses of those scoring below this cut point were removed from the analysis. Participants were advised that they could ask for help to complete the survey but that it was their experience we wanted to know about.

Measures

Unmet Needs Instrument for Dementia (UNI-D)

Given the lack of a self-report instrument designed specifically for assessing unmet needs of people with dementia, we developed an instrument. A mixed-methods approach, guided by best practice [29], was employed to develop the items, pilot-test and refine the instrument and evaluate the final version (see Fig. 1 for process). The final instrument consisted of 26 items across five domains (see Table 2). Participants were asked if they needed help with each item, with response options ‘Yes’ or ‘No’. Participants were advised to select ‘No’ if they believed the item was not relevant to them. Items were prefaced with the following text: ‘We would like to know where you need extra help in your life. This is on top of help you may already receive from family, friends or care professionals.’

Fig. 1

Flow diagram of steps to develop the UNI-D.

Table 2

Proportion of participants endorsing each item as an unmet need (n = 95)

Rank	Item	Domain	n	%
1	More help with remembering things	Health and wellbeing	61	64%
2	More help with finding possible treatments for dementia	Dementia support	42	44%
3	More help with understanding who you should contact if you have a problem or concern related to dementia	Dementia support	34	36%
4	To see friends and family more often	Activities and hobbies	31	33%
5	More help with feelings that you have been experiencing	Health and wellbeing	28	29%
6	More help with understanding how your dementia might change over time	Dementia support	28	29%
7	More support to do things by yourself	Activities and hobbies	26	27%
8	More help with transport to and from places	Daily tasks	25	26%
9	More help with understanding why you have been diagnosed with dementia	Dementia support	25	26%
10	More help with gardening	Daily tasks	24	25%
11	More help with understanding what dementia is	Dementia support	24	25%
12	More activities you enjoy	Activities and hobbies	22	23%
13	More help with using the ‘My Aged Care’ website	Access to support	19	20%
14	More financial assistance	Access to support	19	20%
15	More help with concerns about your health	Health and wellbeing	15	16%
16	More help with managing medications	Health and wellbeing	15	16%
17	More help to maintain routines of things you have always done	Activities and hobbies	14	15%
18	More access to home help services	Access to support	14	15%
19	More help with housework	Daily tasks	13	14%
20	More help with stopping pain	Health and wellbeing	12	13%
21	More help with doing the shopping	Daily tasks	10	11%
22	More help with preparing meals	Daily tasks	9	9.5%
23	More legal assistance	Access to support	7	7.4%
24	More help with moving around your home	Daily tasks	5	5.3%
25	More help with bathing or dressing	Daily tasks	5	5.3%
26	More help with going to the toilet	Daily tasks	3	3.2%

Sociodemographic characteristics

Participants self-reported their age, sex, living arrangements, and other chronic health conditions (heart disease, lung disease, back pain, cancer, diabetes, arthritis, mental health condition, Other –specify). Participants’ informal carers (if they had one and were available) were asked to report the type of dementia, how long ago the diagnosis had been made and their perceptions of the severity of the individual’s symptoms on a scale from 1–10.

Quality of life

Participants were asked ‘Overall how would you rate your own current quality of life?’ and responded by circling a number on a horizontal visual analogue scale from 1 (very poor) to 10 (excellent).

Acceptability

Participants were asked whether overall the survey questions were easy to understand, if they found any questions distressing and whether they received any help (no, a little, a lot) to complete the survey. They were also asked to indicate how long they had taken to complete the whole survey.

Analysis

Analyses were conducted in STATA v11 [30]. Where the information was available, possible response bias was assessed by comparing the age and sex of those returning a completed survey with those who did not return a survey using Chi-square tests. Descriptive statistics were calculated for demographics. For the unmet needs items, the proportion of participants that responded ‘Yes’ for at least one item, and the median and mean number of needs identified was calculated. Items were then ranked in descending order to identify the areas of most need. As the proportion of missing data was < 5% for all but two items, missing data for individual items were replaced with the response ‘No’. This is a conservative approach that will underestimate prevalence of unmet needs. The reliability of the UNI-D was evaluated using Cronbach’s alpha with a value above 0.7 being acceptable. Correlation between items was explored using item-total correlations and pairwise item correlations. Any items with an item-total correlation less than 0.3 were identified and pairs of items with correlations higher than 0.8 examined for redundancy. Convergent validity was examined by calculating the Pearson correlation coefficient between total number of unmet needs and quality of life score. A moderate (> 0.4) negative association was taken as evidence of adequate convergent validity [12].

RESULTS

Measure development

Item development

A working party consisting of behavioral scientists (n = 5), statisticians (n = 1), health professionals working in aged care (n = 2), carers (n = 2), and people with dementia (n = 1) were responsible for generating items and defining domains. The peer-reviewed and grey literature on the needs, concerns or challenges experienced by people with dementia was reviewed. On the basis of the review, 11 domains were delineated (e.g., emotional, physical, relationships, practical) and a list of possible items was generated. Interviews were conducted with three geriatricians to identify any additional issues of concern for people with dementia that they had encountered in their practice. This resulted in a list of 191 items.

In-depth telephone interviews with eight people with dementia and a focus group involving two people with dementia were conducted with individuals recruited from two geriatric clinics. Using either a semi-structured interview or discussion guide, an experienced interviewer and facilitator (EC and AH) asked people with dementia to discuss their most recent needs. Prompts were used to identify needs across domains. The focus group and all interviews were audio-recorded, transcribed and the content analyzed using the constant comparative method. Important themes and items were identified from the initial item pool to create the first draft instrument comprising 28 items. The initial instrument response scale consisted of three options: I don’t need help/I get help/I need more help.

Content validity

A draft of the unmet needs instrument was sent to people with dementia who had participated in the interviews and agreed to provide feedback on the survey (n = 7), people with dementia attending support groups (n = 7), carers (n = 2), health care providers (n = 5), representatives from relevant community organizations (n = 2) and behavioral scientists (n = 7) for feedback. Respondents were asked whether any items should be added or removed, and whether the survey was easy to understand. Any gaps or irrelevant items identified by the respondents were reviewed by members of the working party and changes made if appropriate. Some changes to the wording were made to ensure a Flesch-Kincaid grade 4–6 reading level as recommended among groups of adults at risk of lower literacy [31]. Additional changes were made to simplify the response options to yes/no given feedback that the initial 3-point response scale was too complex. The second draft of the instrument comprised 38 items across eight domains.

Pre-testing items

To check survey comprehension and item floor and ceiling effects, the second draft of the instrument was completed by 15 people with dementia face-to-face and another 16 people by mail. In face-to-face interviews, participants were asked whether extra information was needed to aid item comprehension and which items caused confusion or distress. Based on the responses, 15 items were reworded, removed, combined, or separated to ensure understanding and relevance. As some participants lacked insight that they had a diagnosis of dementia, unmet needs items that specifically referred to dementia (e.g., “More help with understanding what dementia is”, “More help with understanding why you have been diagnosed with dementia”) were placed in a separate domain “getting support for dementia”.

The final instrument, named the UNI-D, comprised 26 items across five proposed domains: daily tasks (8 items), activities and hobbies (4 items), health and wellbeing (5 items), access to support (4 items), and getting support for dementia (5 items). A total score equaling the number of unmet needs per participant, is calculated by scoring 1 for each “YES” response. See Supplementary Figure 2 for the free to use instrument and instructions.

Psychometric evaluation

Survey administration

Of 316 eligible people with dementia sent an information pack, 112 returned a completed survey (response rate 35%). Response bias could not be assessed for the full sample given the variety of sources used to obtain the sample. Using available data for those recruited through geriatric clinics and aged care providers, there was no evidence of response bias in terms of gender (χ² (1df,n = 186) =3.26, p = 0.07) or age (χ² (1df,n = 172) = 0.027, p =0.87). Of those who responded, 17 were removed as they were ineligible, either due to living in a residential aged care facility (n = 4), missing capacity questions (n = 7) or scoring fewer than 3 out of 4 on the capacity questions (n = 6), leaving a sample size of 95 for these analyses. Sociodemographic characteristics of the sample are shown in Table 1. The majority of participants were male (61%), aged at least 75 years (79%), and lived with their partner or spouse (82%). Based on available data from carers (n = 50), almost two thirds (62%) had Alzheimer’s disease, and 61% had been diagnosed within the last 3 years. Carers’ mean rating of perceived symptom severity was 5.2 (SD = 1.67) out of 10 (n = 60). Approximately three quarters (73%) had at least one additional health condition with the most common being arthritis (29%) and back pain (23%). The median quality of life rating was 8 out of a maximum 10 (Q1 = 6; Q3 = 9).

Table 1

Sociodemographic characteristics of study sample (n = 95)

Variable		Mean	SD
Age		79.3	7.9
Perceived dementia severity (n = 60)^*		5.2/10	1.67
Variable	Category	N	%
Sex	Male	57	61%
	Female	37	39%
Living arrangement	Alone	6	6%
	Partner/spouse	78	82%
	Child/grandchild	11	12%
Other chronic health conditions	At least one	66	73%
	None	24	27%
Diagnosis (n = 50)^*	Alzheimer’s disease	31	62%
	Other	19	38%
Time since diagnosis (n = 59)^*	≤ 3 y	36	61%
	> 3 y	23	39%

^*Participants’ informal carers (where available) were asked to provide these data. The available sample size for each of these variables is indicated in brackets.

Instrument acceptability

The final instrument had a Flesch-Kincaid grade level of 5.0. It took participants an average of 23 mins (SD = 11.7) to complete the entire survey of which the UNI-D comprised 26 of the 50 questions. Participants indicated the questions were easy to understand (97%) and did not cause distress (93%). Half the participants had a little help to complete the survey and 21% had a lot of help. Item completion was high with only 2 of the 26 items missed by more than 5% of participants. The two items with higher proportions of missing data: ‘More help with using the My Aged Care website’ (12% missing), and ‘more financial assistance’ (7% missing) are likely to have been missed by more participants due to be not being relevant to their situation. Eighty-eight percent of participants had one or fewer missing responses.

Instrument evaluation

Iterative consultations with people with dementia, carers and health care professionals helped establish the face and content validity of the UNI-D. In addition, convergent validity was demonstrated by a moderate negative relationship between the number of needs reported and self-reported quality of life (r = –0.43). Cronbach’s alpha was 0.88 for the overall scale indicating adequate reliability. All item-total correlations were above 0.3 except for the item “bathing and dressing” (0.11) and all pairwise item correlations were less than 0.8 (maximum = 0.67).

Prevalence and frequency of unmet needs

Eighty-five percent (n = 81) of participants identified at least one unmet need on the UNI-D. Fifteen percent of participants reported no unmet needs, and no one endorsed all of the unmet needs items. The median number of unmet needs was 4 out of a possible 26 (minimum = 0; quartile 1 = 1; quartile 3 = 9; maximum = 19) and mean was 5.6 (SD = 5.1).

Of the 26 items, 14 were endorsed as an unmet need by at least 20% of respondents (see Table 2). The most frequently endorsed unmet need was for more help with ‘remembering things’ (n = 61, 64%). Needing help with accessing dementia-related support was also frequently reported, with participants indicating that they needed more help with ‘finding possible treatments for dementia (44%)’, ‘understanding who to contact if they have a problem or concern related to dementia (36%)’, and ‘understanding how their dementia might change over time (29%)’. Participants indicated they needed more help with: activities and hobbies including ‘seeing friends and family more often’ (33%), ‘having more activities they enjoy doing’ (23%) and ‘support to do things for themselves’ (27%); and with daily tasks such as ‘transport to and from places’ (26%) and ‘gardening’ (25%). Just under one in three participants (29%) reported that they wanted more help with ‘feelings they had been experiencing’.

Five items (‘preparing meals, legal assistance, moving around home, bathing or dressing, going to the toilet’) were endorsed by less than 10% of participants indicating that they either had enough help with these items or that these were not concerns.

DISCUSSION

Existing tools for assessing unmet needs among people living with dementia use proxy reports from caregivers [32, 33] or are general measures of unmet needs that were not specifically developed for people with dementia [26]. While these can provide valuable information, it is important that people with dementia who have capacity, have the opportunity to report their unmet needs themselves, using a tool that is specific to the issues of living with dementia. The UNI-D is, to our knowledge, the first self-report instrument developed specifically to assess unmet needs among people with dementia. The small number of participants (n = 95) provided an insufficient sample to undertake a comprehensive psychometric evaluation, however, the free to use instrument demonstrated adequate internal reliability, face and convergent validity. Acceptability was evidenced by a low proportion of missing data, short time to complete and high agreement that the questions were easy to understand and not distressing.

Participants identified a median of 4 (IQR = 1–9) and mean of 5.6 (SD = 5.1) unmet needs on the 26-item instrument. This is higher than the number of needs identified in previous research with people with dementia using the CANE (mean of 0.5–1.17 unmet needs out of 24 items) [4 , 25]. This may be due to differences in the items assessed, the response scales or the sample compositions in the research. While the CANE was developed for older adults with any mental disorder, our instrument has been designed to specifically identify unmet needs of people with dementia. The CANE uses a more detailed response scale including assessment of whether there is a need, whether help is being received, and whether this help is appropriate. Finally, the differences observed may be due to differences in samples. For example, there were fewer females in our sample compared to these previous studies. There may also have been differences in the samples regarding severity of dementia and access to services to meet needs.

‘Remembering things’ was the most commonly endorsed need among people in our sample (64%). This is not surprising given this is the symptom most commonly associated with dementia [3]. The proportion of people endorsing this need was higher than in other studies of people with dementia (10%) [4] and carers reporting on the needs of the person they support (35%) [34]. This may reflect differences in demographic characteristics of the samples (e.g., the severity of dementia). It may also reflect differences across countries in the extent to which people receive support to manage memory problems. For example, in one UK study of people with dementia living in the community, problems related to memory was endorsed as the highest met need (94%) [12]. This finding suggests it is possible to support people with dementia to reduce the impact of memory loss. Our finding that almost two-thirds reported this as an unmet need suggests that evidence-based interventions are needed to overcome memory loss. For example cognitive training strategies have shown promise in assisting people with dementia with recollection [35]. All five items relating to dementia support were endorsed by 20% or more of the sample, indicating that many people living with dementia need additional information about the causes, course, and management of dementia. Of particular concern, over one in three needed help with knowing who to contact if they had problems or concerns related to dementia. This is inconsistent with Australian clinical practice guidelines which recommend that this information be provided to people with dementia and their carers both verbally and in written format [36]. Information needs are commonly reported in previous literature (10–27%) [4 , 34].

Participants also identified unmet needs related to social engagement and activities such as seeing friends and family more often and having more activities they enjoy doing. Activities and company are frequently reported as unmet needs by people with dementia [12 , 34]. There is some evidence that high unmet social needs in people with dementia led to high stress for carers [37] and that people with dementia who have low community involvement have more unmet needs [12]. There is emerging evidence that providing engaging leisure activities may improve functioning and delay cognitive decline in people with dementia [38, 39]. It is recommended that activities be matched to an individual’s physical and cognitive abilities and interests, and adapted as the disease progresses [40]. Therefore, is it important for future research to explore which types of activities are most effective in improving outcomes, and how best to offer evidence-based activities that align with individual interests.

Limitations

The survey response rate was modest (35%) and slightly lower than similar studies [4, 34]. It is likely that our sample underrepresented those with more severe symptoms. People with more severe symptoms may have been less likely to have capacity to consent and complete the survey. In line with this, carers’ mean ratings of perceived dementia severity were 5.2 out of 10. We assessed dementia severity from caregivers’ perspective. Severity of dementia may be assessed more accurately in future studies using a standardized assessment of cognitive impairment (e.g., Mini-Mental State Examination). We included four questions to assess capacity to consent and increase the reliability of the responses captured. These questions were adapted from the UBACC and not validated. While we encouraged the person with dementia to give their perspective, it is possible that some answers were guided by a carer who assisted them to complete the instrument.

The item ‘Finding possible treatments for dementia’ was endorsed by 44% of participants. While there are effective treatments available to alleviate some behavioral and psychological symptoms of dementia [36], it is possible that some participants may have interpreted this to mean potential treatments to reverse or slow the progression of dementia. This item may be revised in future to specify the type of treatments currently available for people with dementia.

Data on type of dementia was only available for just over half of the sample. It was therefore not possible to determine appropriateness of the instrument for different sub-types of dementia. Given the limited sample size it was not possible to conduct a factor analysis to further assess construct validity of the instrument.

Conclusions

Seeking to understand and meet the needs of people living with dementia is an important aspect of providing person-centered care. This study presents data on a new instrument to assess needs of people with dementia, the UNI-D. The UNI-D has demonstrable internal consistency, face and convergent validity and is acceptable to people with dementia. Further psychometric testing with larger samples is warranted. However, the UNI-D could be used in a clinical environment to explore self-reported needs of community dwelling people living with dementia. Our results suggest that individuals with dementia may value assistance in managing problems with memory, information about dementia and support to participate in meaningful social and leisure activities. Interventions designed to meet these needs should be developed, implemented, and evaluated using a rigorous research methodology.

Footnotes

ACKNOWLEDGMENTS

This research was supported by a National Health and Medical Research Council Dementia Research Team Grant (APP1095078) and infrastructure funding from the Hunter Medical Research Institute. Allison Boyes is supported by a National Health & Medical Research Council Early Career Fellowship (APP1073317). Mariko Carey is supported by a NHMRC Boosting Dementia Research Leadership Fellowship (APP1136168). The authors would like to thank the people living with dementia who gave their time to contribute to this study; William Browne and Elaine Todd for contributing to development of the unmet needs measure; and Sandra Dowley for data management.

Authors’ disclosures available online ().

The supplementary material is available in the electronic version of this article: .

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