Care needs of people living with dementia

This page describes how the care needs of people with dementia differ between people living in the community and those living in cared accommodation (such as a residential aged care home), including differences in:

On this page, ‘people with dementia’ refers to Australians who reported having diagnosed dementia in 2022 from the Survey of Disability, Ageing and Carers (SDAC). For key definitions of measures of dementia used on this page, see Measures of dementia in the 2022 SDAC.

People with suspected or diagnosed dementia in the 2022 SDAC

According to the SDAC, in 2022, around 1% of men and women had diagnosed or suspected dementia. Almost 2 in 3 people with diagnosed or suspected dementia (63%) were living in the community (Table S5.1). Around half of people with diagnosed dementia lived in the community (47%), and almost everyone with suspected dementia lived in the community (89%).

Among people where a diagnosis of dementia was reported, dementia was most commonly diagnosed between the ages of 70 and 84 (Table S5.2). This was similar for people in the community or in cared accommodation, and for men and women. However, while most people living in the community had their age at diagnosis reported, over half of people in cared accommodation (57%) did not. Men were more likely to have their age at diagnosis reported (75%) compared to women (66%), which may reflect the higher proportion of women with dementia living in cared accommodation compared to men (Table S5.3).

Most people (86%) reported the type of dementia they were diagnosed with. Among people who reported their dementia type, most people had Alzheimer’s disease (36%) or unspecified dementia (including other dementias and dementia with Lewy bodies) (36%), followed by vascular dementia (14%) and mixed dementia (14%). These patterns were similar for people in the community or in cared accommodation, and for men and women (Tables S5.4 and 5.5).

Level of disability

According to the SDAC, in 2022, 69% of people with dementia living in the community and 93% of people with dementia living in cared accommodation were considered to have profound limitations. This means they are unable to do, or always need help with self-care, communication and/or mobility (Table S5.6; Figure 5.1). This demonstrates the significant impact dementia has on physical and cognitive functioning, and the need for continued care and support that living in cared accommodation provides.

More women were considered to have a profound limitation than men (86% and 74%, respectively), however this difference was not significant (Table S5.7).

For more information on the SDAC and how it classifies disability, expand the section Measures of disability in the Survey of Disability, Ageing and Carers (SDAC) 2022.

Figure 5.1: Level of disability among people with dementia in 2022: estimated percentage by place of residence

Figure 5.1 is a stacked bar graph showing the estimated percentage of people with dementia by disability level in 2022 (no limitations, mild/moderate limitations, severe limitations and profound limitations) by place of residence (living in the community or in cared accommodation). Around 93% of people with dementia living in cared accommodation have profound limitations, whereas 69% of people with dementia living in the community have profound limitations. Around 6% of people with dementia living in the community had no limitations and 10% had mild/moderate limitations.

Figure 5.1 is a stacked bar graph showing the estimated percentage of people with dementia by disability level in 2022 (no limitations, mild/moderate limitations, severe limitations and profound limitations) by place of residence (living in the community or in cared accommodation). Around 93% of people with dementia living in cared accommodation have profound limitations, whereas 69% of people with dementia living in the community have profound limitations. Around 6% of people with dementia living in the community had no limitations and 10% had mild/moderate limitations.

Notes:

  1. People with dementia who reported their sex as 'other' were excluded from analysis for confidentiality reasons.
  2. 'Mild or moderate limitations' includes the following responses: 'has disability and moderately limited in core activities' and 'has disability and mildly limited in core activities'.
  3. 'No limitations' includes the following responses: 'has disability and not limited in core activities but restricted in schooling or employment', 'has disability and not limited in core activities or restricted in schooling or employment', has a long-term health condition without disability' and 'no long term health condition or disability'.
  4. Estimates for people with dementia living in the community who reported mild, moderate or no limitations have a relative standard error between 25% and 50% and should be used with caution.

Co-existing health conditions

Living with two or more long-term health conditions is common, and becomes more common as people age (AIHW 2025).

People with dementia often have a number of co-existing health conditions, which can increase or complicate their care needs. Based on the 2022 SDAC, we report on long-term co-existing health conditions, comparing people living in the community with those living in cared accommodation.

Long-term health conditions are defined as diseases or disorders lasting (or likely to last) for 6 months or more, and conditions that are periodic or episodic in nature (for example, asthma or epilepsy) where the attack or relapse has occurred in the last 12 months (ABS 2022b).

According to the SDAC, people with dementia living in the community had an average of 6.8 long-term health conditions (excluding dementia). This was lower than for those living in cared accommodation (7.9 conditions).

For people with dementia in cared accommodation, the average number of long-term health conditions was similar for all age groups, increasing slightly for people aged 90 or over (8.4). For people with dementia in the community there was no clear pattern between age and number of long-term health conditions (Table S5.8, Figure 5.2).

Figure 5.2: Estimated average number of health conditions among people with dementia in 2022: by age and place of residence

Figure 5.2 is a bar graph showing the estimated average number of long-term health conditions among people with dementia in 2022 by place of residence and age. The average number of health conditions increased with age both among those living in the community and those living in cared accommodation. There is a large increase in the average number of health conditions in those living in the community for those aged 70–74 (8.2 health conditions) before reducing to 6.7 in those aged 75-70. In each age group, people with dementia living in cared accommodation had more health conditions on average that those with dementia living in the community.

Figure 5.2 is a bar graph showing the estimated average number of long-term health conditions among people with dementia in 2022 by place of residence and age. The average number of health conditions increased with age both among those living in the community and those living in cared accommodation. There is a large increase in the average number of health conditions in those living in the community for those aged 70–74 (8.2 health conditions) before reducing to 6.7 in those aged 75-70. In each age group, people with dementia living in cared accommodation had more health conditions on average that those with dementia living in the community.

Notes:

  1. Average number of health conditions excludes dementia.
  2. Average number of health conditions among people with dementia living in the community aged <70 has a relative standard error between 25% and 50% and should be used with caution.

People with profound limitations, whether living in cared accommodation or the community, tended to have more long-term health conditions (average of 8.1 and 7.0, respectively) than people with no limitations (average of 4.3 and 3.4, respectively) (Table S5.9; Figure 5.3).

Figure 5.3: Estimated average number of health conditions among people with dementia in 2022: by level of disability and place of residence

Figure 5.3 is a bar graph showing the estimated average number of long-term health conditions among people with dementia in 2022 by place of residence and disability level. The average number of health conditions increased with increasing level of disability among people living in cared accommodation. For those with dementia living in the community, there was little variation in the average number of health conditions across disability levels (except for people with no limitations, where the average number of health conditions was much lower).

Figure 5.3 is a bar graph showing the estimated average number of long-term health conditions among people with dementia in 2022 by place of residence and disability level. The average number of health conditions increased with increasing level of disability among people living in cared accommodation. For those with dementia living in the community, there was little variation in the average number of health conditions across disability levels (except for people with no limitations, where the average number of health conditions was much lower).

Notes:

  1. Average number of health conditions excludes dementia.
  2. People with dementia who reported their sex as 'other' were excluded from analysis for confidentiality reasons.
  3. Mild or moderate limitations includes the following responses: 'has disability and moderately limited in core activities' and 'has disability and mildly limited in core activities'.
  4. 'No limitations' includes the following responses: 'has disability and not limited in core activities but restricted in schooling or employment', 'has disability and not limited in core activities or restricted in schooling or employment', has a long-term health condition without disability' and 'no long term health condition or disability'.
  5. Average number of health conditions among people with dementia living in the community with no limitations has a relative standard error between 25% and 50% and should be used with caution.

Common co-existing health conditions

According to the SDAC, the most common co-existing health conditions in people with dementia in 2022 varied by whether they were living in the community or in cared accommodation (Figure 5.4; Table S5.10).

The most common co-existing health conditions in people with dementia include:

  • arthritis – more common among people living in cared accommodation (57%) than those living in the community (30%)
  • high blood pressure – similar among people living in cared accommodation (54%) and the community (55%)
  • depression and anxiety disorders – more common among people living in cared accommodation (50% and 27%, respectively) than those living in the community (24% and 13%, respectively)
  • high cholesterol – more common among people living in the community (48%) than people living in cared accommodation (19%)
  • incontinence - common among people living in cared accommodation (48%), but not reported among people living in the community
  • type 2 diabetes – this was higher among people living in the community (33%) than people living in cared accommodation (18%).

Figure 5.4: Common health conditions among people with dementia in 2022: estimated percentage by place of residence

Figure 5.4 is a bar graph showing the estimated percentage of people with dementia in 2022 who had other health conditions by place of residence and health condition. Hypertension and high cholesterol were the most common coexisting health conditions among people with dementia living in the community. Arthritis, hypertension and depression were the most common coexisting health conditions among people with dementia living in cared accommodation. Incontinence was reported in 48% of people with dementia living in cared accommodation and data was not available for incontinence among people with dementia living in the community.

Figure 5.4 is a bar graph showing the estimated percentage of people with dementia in 2022 who had other health conditions by place of residence and health condition. Hypertension and high cholesterol were the most common coexisting health conditions among people with dementia living in the community. Arthritis, hypertension and depression were the most common coexisting health conditions among people with dementia living in cared accommodation. Incontinence was reported in 48% of people with dementia living in cared accommodation and data was not available for incontinence among people with dementia living in the community.

Notes:

  1. Health conditions were based on the International Statistical Classification of Diseases and Health Related Problems, 10th revision.
  2. Health conditions shown were the most common health conditions reported across both types of residence.
  3. Estimates for 'anxiety disorder, including generalised anxiety disorder', 'angina', 'other heart diseases', 'diseases of the oesophagus', 'back pain or problems not elsewhere classified', 'osteoporosis' and ‘breathing difficulties or shortness of breath' among people with dementia living in the community have a relative standard error between 25% and 50% and should be used with caution.
  4. As a person may have more than one health condition, the percentages will sum to more than 100%.
  5. N.E.C. stands for not elsewhere classified.

Assistance needs for people with dementia

People with dementia often require care in various activities of daily living. This section presents the broad assistance needs of people with dementia, how needs vary by place of residence and the source of assistance for people with dementia.

In the 2022 SDAC a person could report a need for assistance if they were aged over 65 or if they had an impairment or limitation that restricted their ability to undertake everyday activities that had lasted or was expected to last least 6 months.

Carers of people with dementia provides information on the informal carers, who provide support and assistance for people with dementia.

Refer to Residential aged care for further information based on aged care administrative datasets on the assistance needs among people with dementia living in cared accommodation.

Broad assistance needs in the community

Based on the SDAC, in 2022, more than three-quarters of people with dementia living in the community needed assistance with 4 activities:

  • mobility (84%),
  • health care (81%)
  • cognitive or emotional tasks (78%)
  • property maintenance (77%; Table S5.11)

Women were more likely to need assistance with household chores (79%) compared with men (45%). Women also needed more assistance with property maintenance (87%) compared to men (67%) and less assistance with communication (48%) compared to men (58%), however these differences are not significant. For all other activities, there was little difference in the proportion of men and women living in the community who required assistance.

Figure 5.5: People with dementia living in the community who required assistance in 2022: estimated percentage by sex and activity

Figure 5.5 is a bar graph showing the estimated percentage of people with dementia living in the community who required assistance in 2022 by sex and the type of activity they required assistance with. The majority required assistance with mobility, health care and cognitive or emotional tasks. Women were more likely to need assistance with household chores, but for all other activities, there was little difference by sex.

Figure 5.5 is a bar graph showing the estimated percentage of people with dementia living in the community who required assistance in 2022 by sex and the type of activity they required assistance with. The majority required assistance with mobility, health care and cognitive or emotional tasks. Women were more likely to need assistance with household chores, but for all other activities, there was little difference by sex.

Notes:

  1. Mobility excludes walking 200m, stairs and picking up objects.
  2. Persons could report an activity needing assistance if they were aged 65 or if they had an impairment or limitation that restricted their ability to undertake everyday activities that had lasted or was expected to last 6 months.

Broad assistance needs in cared accommodation

Most people living with dementia in cared accommodation (over 90%) required assistance with health care, self-care, reading or writing, mobility, and cognitive or emotional tasks, and 3 in 4 (76%) required assistance with communication. This reflects the greater care needs of people living in cared accommodation, such as permanent residential aged care homes.

Unsurprisingly, for each activity the proportion of people with dementia who needed assistance was lower for those living in the community than those living in cared accommodation and there was little difference by sex (Figure 5.6).

The greatest difference between people living in the community or cared accommodation was in the need for assistance with self-care; 66% of people with dementia living in the community compared with 98% of those living in cared accommodation. This was followed by assistance with reading or writing (68% in the community and 95% in cared accommodation) and communication (53% in the community and 76% in cared accommodation).

Note, meal preparation, private transport, property maintenance and household chores are not included as these activities are provided for people living in cared accommodation.

Figure 5.6: People with dementia who required assistance in 2022: estimated percentage by sex, activity and place of residence

Figure 5.6 is a bar graph showing the estimated percentage of people with dementia who required assistance in 2022 by sex, place of residence and the type of activity they required assistance with. The percentage of men and women with dementia who needed assistance in each activity was lower among those living in the community than those living in cared accommodation. There was little difference by sex.

Figure 5.6 is a bar graph showing the estimated percentage of people with dementia who required assistance in 2022 by sex, place of residence and the type of activity they required assistance with. The percentage of men and women with dementia who needed assistance in each activity was lower among those living in the community than those living in cared accommodation. There was little difference by sex.

Who assists people with dementia in the community?

Assistance from informal sources (such as family and friends) as well as from formal sources (such as dementia-specific, disability support and/or aged care services) are essential for people with dementia living in the community.

According to the SDAC, in 2022, over 1 in 4 people with dementia (28%) who were living in the community relied on informal assistance only (Table S5.12).

For information on how the source of assistance varies among people with dementia born in non-English speaking countries, refer to Culturally and linguistically diverse people with dementia. For information on informal carers of people with dementia refer to Carers of people with dementia.

Source of assistance in core and other activities

The SDAC grouped activities in which people require assistance into 2 groups:

  • Core activities – this includes self-care, communication and mobility. People with more severe limitations (severe or profound limitations) require assistance with one or more of these activities.
  • Other activities – this includes private transport, property maintenance, household chores, reading or writing, health care, cognitive or emotional tasks, and meal preparation.

If we look at the source of assistance people with dementia living in the community (and who needed assistance with activities) were receiving by whether this was for core activities or other activities:

  • Over 1 in 2 people (58%) received assistance in core activities from informal sources only, while 42% received formal assistance with core activities.
  • About 2 in 3 people (67%) received formal assistance with other activities, while 33% received assistance in other activities from informal sources only (Figure 5.7; Table S5.13).

The high percentage of people with dementia receiving support from informal carers, specifically for core activities, demonstrates the importance and responsibilities that informal carers (such as family and friends) have for caring for an individual with dementia. Refer to Carers of people with dementia for more information on informal carers.

Figure 5.7: People with dementia living in the community who require assistance in 2022: estimated percentage by source of assistance for core and other activities

Figure 5.7 is a bar graph showing the estimated percentage of people with dementia who were living in the community and required assistance in 2022 by source of assistance for core and other activities. Core activities include self-care, communication and mobility. Other activities include private transport, property maintenance, household chores, reading or writing, health care, cognitive or emotional tasks, and meal preparation. Over half of people with dementia who were living in the community and required assistance were receiving support with core activities from informal sources only (such as family and friends). Around one-third were receiving support with other activities from informal sources only.

Figure 5.7 is a bar graph showing the estimated percentage of people with dementia who were living in the community and required assistance in 2022 by source of assistance for core and other activities. Core activities include self-care, communication and mobility. Other activities include private transport, property maintenance, household chores, reading or writing, health care, cognitive or emotional tasks, and meal preparation. Over half of people with dementia who were living in the community and required assistance were receiving support with core activities from informal sources only (such as family and friends). Around one-third were receiving support with other activities from informal sources only.

Notes:

  1. 'Core activities' includes the following activities: 'self-care', 'mobility (excludes walking 200m, stairs and picking up objects)' and 'communication'.
  2. 'Other activities' includes the following activities: 'private transport', 'household chores', 'property maintenance', 'cognitive or emotional tasks', 'health care', 'reading or writing' and 'meal preparation'.
  3. Persons could report activities needing assistance if they were aged over 65 or if they had an impairment or limitation that restricted their ability to undertake everyday activities that had lasted or was expected to last 6 months. 
  4. 'Receives formal assistance (noting that some of these people also receive informal assistance)' includes the following responses: 'receives formal assistance only' and 'receives formal and informal assistance'.
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