When Dementia Progresses: What Families Need to Know

Dementia is a progressive neurodegenerative condition that impacts memory, cognition, and daily functioning. As the condition advances, many individuals experience functional decline, characterised by diminished capacity to perform everyday tasks. This often occurs alongside anxiety and behavioural changes, which can significantly complicate care. At the 11th hour clinic, we recognise the importance of supporting families and carers with a holistic approach to care.

What is Functional Decline?

Functional decline in dementia refers to the progressive loss of independence in activities of daily living (ADLs), including hygiene, dressing, eating, and mobility. Research shows that functional deterioration is not only associated with cognitive impairment, but also with neuropsychiatric symptoms such as apathy, agitation, and anxiety (De Oliveira et al., 2015). These changes often predict faster institutionalisation and poorer quality of life.

Anxiety and Behavioural Changes: A Hidden Driver of Decline

While memory loss is often the focus in dementia, anxiety is a common and under-recognised symptom. Studies estimate that up to 70% of individuals with dementia experience anxiety, which may exacerbate confusion, avoidance, and behavioural outbursts (Mahgoub & Calloway, 2022). These symptoms often stem from the inability to understand one’s environment or articulate needs, resulting in what may appear as aggression, wandering, or resistance to care.

Key behavioural and psychological symptoms of dementia include:

• Agitation or aggression
• Sleep disturbances
• Paranoia or delusions
• Repetitive behaviours
• Emotional volatility

According to Cerejeira et al. (2012), these symptoms are associated with faster cognitive and functional decline, higher carer burden, and increased rates of hospitalisation.

The Role of Families and Carers: Central, Yet Undersupported

Family carers provide the majority of support for people with dementia, often at great personal cost. Emotional exhaustion, guilt, and role confusion are common, especially when carers are faced with behavioural changes or deterioration in communication (Etters et al., 2008). Carer well-being has a direct impact on the person with dementia’s outcomes, including the success of community-based care and delay in institutionalisation (Brodaty & Donkin, 2009). At the 11th hour clinic, we take a systemic view, recognising that the needs of carers are just as important as those of the person receiving care.

What Helps Carers and Families Cope?

Evidence-based strategies to support carers and preserve functional abilities include:

• Structured routines: Consistency reduces anxiety and confusion (Gitlin et al., 2009).
• Psychoeducation: Carers who understand the nature of dementia feel more empowered and report lower distress.
• Communication training: Simplifying language, using visual cues, and avoiding confrontation help reduce behavioural incidents (Eggenberger et al., 2013).
• Behavioural coaching: Applied behavioural analysis can help decode and respond effectively to difficult behaviours.
• Carer-focused therapy: Psychological support reduces depressive symptoms in carers (Gallagher-Thompson et al., 2020).

A Human-Centred, Relational Approach

Ultimately, supporting people with dementia is not only about managing symptoms. It’s about preserving connection. Anxiety and behavioural expressions are often unmet communication needs. When families are equipped with the tools to understand and respond compassionately, both the carer and the individual benefit.

At the 11th hour clinic, we provide:

• Psychological coaching for carers
• Personality-informed relational strategies
• Support navigating transitions (e.g. to residential care)

References

Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228.

Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73.

De Oliveira, A. M., Radanovic, M., & Forlenza, O. V. (2015). The impact of neuropsychiatric symptoms on caregiver burden in Alzheimer’s disease. International Journal of Geriatric Psychiatry, 30(4), 377–382.

Eggenberger, E., Heimerl, K., & Bennett, M. I. (2013). Communication skills training in dementia care: A systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics, 25(3), 345–358.

Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423–428.

Gallagher-Thompson, D., Solano, N., Coon, D., & Areán, P. (2020). Effective psychotherapy for family caregivers of people with dementia: The REACH OUT trial. Journal of Consulting and Clinical Psychology, 88(5), 417–428.

Gitlin, L. N., Kales, H. C., & Lyketsos, C. G. (2009). Nonpharmacologic management of behavioral symptoms in dementia. JAMA, 308(19), 2020–2029.

Mahgoub, N., & Calloway, S. (2022). Anxiety in dementia: Current understanding and treatment considerations. Current Psychiatry Reports, 24(2), 31–42.