Prevalence and type of unmet needs experienced by carers of people living with dementia

Figures & data

Table 1. Sociodemographic characteristics of carers and the person with dementia they support (n = 169).

Variable		N^a (%)
Carer
Age	<60	25 (15%)
	60–74	62 (37%)
	75+	80 (48%)
Gender	Male	44 (26%)
	Female	123 (74%)
ARIA + score	Major city	139 (84%)
	Inner regional	22 (13%)
	Outer regional	5 (3.0%)
SEIFA	Most disadvantaged (decile ≤ 4)	65 (39%)
	Not disadvantaged (decile > 4)	101 (61%)
Education	High School or below	73 (45%)
	Vocational training, University or Other	91 (56%)
Relationship to person with dementia	Partner	139 (83%)
	Parent	22 (13%)
	Other	7 (4%)
Living arrangement	Live with person they support	156 (93%)
	Live separately	12 (7%)
Private health insurance	Yes	125 (75%)
	No	42 (25%)
Concession card	Yes	136 (81%)
	No	31 (19%)
Health conditions	None	54 (32%)
	At least one	114 (68%)
Person with dementia
Age	<60	3 (2%)
	60–74	32 (19%)
	75+	131 (79%)
Gender	Male	107 (64%)
	Female	60 (36%)
Time since diagnosis	Up to 2 years ago	40 (25%)
	>2 years ago	118 (75%)
Type of dementia	Alzheimer’s Disease	89 (53%)
	More than one type or Other	47 (28%)
	Don’t know	32 (19%)
Symptom severity rating	≤ 3 (mild)	14 (9%)
	4-7 (moderate)	84 (54%)
	≥ 7 (severe)	58 (37%)
Other health conditions	None	46 (27%)
	At least one	122 (73%)

a May not sum to n = 169 due to missing data.

Table 2. Items and their corresponding domains endorsed by at least 20% of respondents as needing at least a little more help, sorted in descending order (n = 169).

Rank	Item	Domain	N (%)
1	Finding the emotional energy that you need to care for the person support you	Your own wellbeing	90 (53%)
2	Worrying about what will happen in the future	Your feelings and emotions	76 (45%)
3	Feeling angry or frustrated	Your feelings and emotions	76 (45%)
4	Keeping the person you support motivated	Managing practical needs of the person you support	71 (42%)
5	Managing stress	Your own wellbeing	67 (40%)
6	Being aware of clinical trials and research that we could be involved in	Finding information	66 (39%)
7	Coping with thinking for the person you support as well as yourself	Your relationship with person you support	64 (38%)
8	Feeling sad	Your feelings and emotions	63 (37%)
9	Keeping the person you support physically active	Managing practical needs of the person you support	63 (37%)
10	Uncertainty about who will care for the person you support if something happens to you	Professional care of the person you support	63 (37%)
11	Feeling as though you are the only one supporting the person with dementia	Your feelings and emotions	62 (37%)
12	Finding meaningful and enjoyable activities for the person you support	Managing practical needs of the person you support	62 (37%)
13	Understanding which symptoms are caused by dementia and which are not	Finding information	62 (37%)
14	Keeping up your social activities or hobbies	Your own wellbeing	58 (34%)
15	Navigating the My Aged Care website	Professional care of the person you support	58 (34%)
16	Balancing your role as a carer with other responsibilities	Your own wellbeing	56 (33%)
17	Getting enough sleep	Your own wellbeing	55 (33%)
18	Feeling unsure about how the person you support would like to be treated	Your feelings and emotions	54 (32%)
19	Explaining to others what you are going through	Your relationship with person you support	53 (31%)
20	Feeling lonely	Your feelings and emotions	52 (31%)
21	Finding information on possible treatments for dementia	Finding information	51 (30%)
22	Knowing when the person you support should move to a nursing home	Finding information	51 (30%)
23	Understanding the perspective of the person you support	Your relationship with person you support	50 (30%)
24	Accessing a home care package with enough help for the person you support	Managing practical needs of the person you support	50 (30%)
25	Accessing dementia-specific care or services	Professional care of the person you support	49 (29%)

Data availability statement

The data that support the findings of this study are available from the corresponding author [EM], upon reasonable request.