Section 4 - Management of diagnosed conditions

1. What is dementia? ^1,2,4

• Dementia:
  • is Australia’s second leading cause of death
  • is not a normal part of ageing
  • increases the risk of dying prematurely
  • is up to 5 times higher in Aboriginal and Torres Strait Islander people
• A clinical syndrome characterised by progressive deterioration in cognition and overall function from a previous baseline. Presenting symptoms which may include:
  • memory loss, especially recent events
  • difficulty performing familiar tasks
  • confusion about time and place
  • language problems
  • problems with abstract thinking
  • poor or decreased judgement
  • personality change
  • loss of initiative and motivation
  • altered emotional control and social behaviour
• Consciousness is not impaired
• Dementia progresses in 3 stages:
  • mild or early – deficits in tasks requiring complex thinking and organisational skills. See Table 2.
  • moderate or middle – the above deficits become obvious, requiring assistance to maintain function
  • severe or late – characterised by high dependence
• Lifestyle modifications reduces the risk of developing dementia

2. Diagnosis of dementia ^1,2

• Dementia is primarily a clinical diagnosis based on clinical assessment and a carer reported history. See Flowchart 1.
• Symptoms are often reported by a family member or carer
• A comprehensive assessment may confirm the diagnosis and dementia sub-type
• Cognitive screening tools (Resource 1.) include:
  • the Kimberley Indigenous Cognitive Assessment (KICA) Screen or KICA Carer used for Aboriginal and Torres Strait Islander people > 45 years of age and followed by cognitive assessment with the KICA-Cog tool
  • the General Practitioner assessment of cognition (GPCOG) used by GPs for the general population
  • the Mini Mental State Examination (MMSE) and the Rowland Universal Dementia Assessment Scale (RUDAS)
  • the Functional Activities Questionnaire or the Barthel Index to assess a person’s activity of daily living function and level of disability

Flowchart 1. Recognition, assessment and diagnosis care pathway ^2,5

• Laboratory investigations are undertaken to exclude reversible causes:
  • drug or alcohol factors
  • thyroid disease
  • vitamin deficiency
  • medicine side effects
  • mental conditions such as depression
  • neurosyphilis in high risk populations
• Neurological imaging is undertaken to help with diagnostic certainty and to excluded other intracranial pathology e.g. stroke
• Differential diagnosis of delirium or depression can be excluded using validated scales such as the Geriatric Depression Scale or the Cornell Scale for Depression in Dementia. See Resource 1.
• See Table 1.

3. Management of dementia ^2,5,7,8

• The goal of managing dementia is to build therapeutic partnerships with the individual and carers to support a dignified, productive and active life, being mindful that:
  • a diagnosis of dementia is stigmatising
  • people with dementia have a life history and are often aware when they are not consulted or valued as experts in their own health and lifestyle
  • inclusive language is a key element to reduce stigma and facilitate best care
  • respect and support maximises a persons involvement in their own care
  • see Engaging our patients

1. Support patient self-management ^1,2,5,7,8
   • Individuals are often aware of their declining abilities and a diagnosis may provide some relief
   • Consider early Advance Care Planning when diagnosis is made so the patient can plan and retain control over their care and personal life as the condition progresses
   • Refer patient to dementia support services after a diagnosis. See Resource 2.
   • Provide the patient with dementia resources. See Resource 3.
   • Refer to services that support the person to stay in their home. See Resource 4.
   • Encourage Lifestyle modifications to maximise independent living
   • Encourage the patient, family and carers to identify barriers to adequate lifestyle modification and medical adherence and create goals to overcome those barriers. See Engaging our patients
2. Social-emotional support ^1,2,5,7,8
   • Major depression may be difficult to detect in people with dementia. Screen for Anxiety disorders and Depression regularly
   • Be mindful that Aboriginal and Torres Strait Islander people:
     • with long-term memory retention might maintain elder roles e.g. to story tell
     • their position of respect may mean the community is reluctant to acknowledge a diagnosis of dementia and associated problems
     • may first present to health services with another concern
   • See Social-emotional wellbeing
3. Behavioural changes ^1,2,5,7,8
   • Quality of life can be affected by concerning behaviours including:
     • verbal or physical aggression
     • repetitive actions or questions
     • resistance or refusal of personal care or services
     • socially or sexually inappropriate behaviour
     • problems associated with eating
     • intrusive thought, disorientation or agitation
     • sleep disturbance
   • Discuss distressing behaviour changes with both the individual and the carer:
     • identify triggers that can alter behaviour e.g. medication toxicity, infections
     • being tolerant of inappropriate dementia related behaviours
     • using behaviour modification, music therapy or medicine to manage behaviours
     • avoiding conflict by listening to the person’s perspective
     • using distraction after listening and addressing concerns
     • maintaining regular routines, activities and tasks
     • engaging in activities that soothe and calm the person
     • communicating quietly and calmly
   • See Resource 2. and 5. for behaviour support
   • Refer to social worker, psychologist or specialist support if needed
4. Functional capacity ^1,2,5,7,8
   • Refer to an occupational therapist or physiotherapist to assess:
     • activities of daily living (ADLs) and instrumental activities of daily living (IADLs) to ensure individual and carer health and safety. See Table 2.
     • for home supports e.g. wheel chair, bedding, rails, trip hazard review
   • Refer eligible people to community support services. See Resource 4. and 6.
5. Carer support ^1,2,5,7,8
   • Dementia is a source of carer burden, stress, isolation and fatigue, especially with problematic behaviours. 80% of care is provided informally by family members
   • Assess and address the needs of the carer. See Engaging our patients
   • Provide emotional and practical support services for carers to address their own needs. See Resources 3. and 7.
   • Involve carers in all service co-ordination and interventions including education, visiting specialist, and telehealth, telephone or online service provision
   • Referral to respite allows carers to have a break and for the person with dementia to stay in their home longer. See Resource 8.
   • See Table 3. for tips when providing care to a person with dementia

6. Physical activity ^1,2,5,7,8
   • Be mindful of the risk of falling during exercise, especially in combination with medicines. Assess for home falls risk. See Resource 9.
   • Avoid long periods of sitting as much as possible
   • Assess for and manage pressure ulcer risk in those who are sedentary. See Resource 10.
   • See Physical activity and sleep

7. Diet and nutrition ^2,5,7,8
   • Ensure the person has the ability to access food and fluids
   • For swallowing or eating problems refer to a dietitian or speech pathologist
   • Eating and drinking may require prompting or assistance
   • See Diet and nutrition
8. Palliative support ^1,2,5,7,8
   • Feelings of grief and loss need to be anticipated from the time of diagnosis. Refer for counselling as required
   • Provide opportunities with the family to discuss end-of-life issues
   • Discuss contents of any advance care planning documents with family
   • See Palliative care
9. Pain ^1,2,5,7,8
   • Up to 68% of older adults with dementia report persistent pain, heightened sensations and lower pain thresholds due to brain changes
   • Recognition and treatment of pain in those with dementia is often overlooked
   • While self-reporting is the accepted standard for assessment of pain, those with dementia progressively lose cognitive capacity to communicate their pain
   • Use validated tools to determine pain in those with dementia. See Resource 11.
   • See Persistent pain

4. Medicines for dementia

• Regularly review medicines and the person’s response to them
• Provide Home Medicines Review (HMR) services to rationalise safe patient medicines use
• Blister and webster packs simplify medicine regimens and improves safety
• Prompting of medicine use by carer may be required
• See Resource 12. for quality use of medicines in those with cognitive impairment

1. Cognition ^1,2,5,7,8
   • Medicines may slow cognitive decline but do not halt progression
   • Minimise or eliminate medicines that contribute to cognitive impairment. See Table 3.
2. Altered behaviour ^1,2,5,7,8
   • Only consider anti-psychotics for behavioural or psychological symptoms where psychosocial interventions have been unsuccessful. See 3.3 Behavioural changes and 3.5 Carer support

5. Cycle of care

6. References

• All Chronic Conditions Manual references are available via the downloadable References PDF

7. Resources

1. Queensland Health Cognitive screening assessment tools
2. Dementia Australia support services and Forward with dementia
3. The Statewide Dementia Clinical Network for all dementia resources or the National Dementia Helpline (1800 100 500)
4. All aged care services via myagedcare
5. The Dementia Behaviour Management Advisory Service (1800 699 799)
6. Medical Aids Subsidy Scheme (MASS)
7. Carers Queensland and Carer Gateway
8. Respite services
9. Individual falls risk screening
10. The Waterlow Pressure Ulcer Risk Assessment Tool
11. the Pain Assessment in Advanced Dementia Scale (PAINAD) for those with dementia or the Abbey pain scale for non-verbalising people
12. Quality use of medicines in those with cognitive impairment