Advanced Dementia

Key Messages

  • Dementia is a life limiting illness and people with dementia have palliative needs.
  • Understanding the terminal nature of the condition and its common patterns helps families and caregivers as they make care decisions.
  • Planning ahead for health care needs is essential because of the progressive cognitive impairments and eventual loss of decision-making capacity associated with dementia. Advance care planning is important and should be done early. Health care professionals should support and encourage this.
  • Routine screening and assessment for symptoms, and appropriate protocols to assist management can assist in better management of symptoms in dementia. Involvement of palliative care services in care planning and support can be beneficial.
  • Validated tools for diagnosis include Functional Assessment Staging Test (FAST), the Clinical Dementia Rating Scale (CDR) or the Global Deterioration Scale (GDS).
  • Use of anti-psychotics is not recommended for the management of psychosis or agitation unless the symptoms are so severe the person is at risk of harming themselves or others.

Evidence Summary

Dementia is not a single disease but a collection of symptoms that are caused by any number of neurocognitive disorders. The most common is Alzheimer’s disease, accounting for 60 to 80 percent of cases, other common diseases are vascular dementia, Lewy body disease and frontotemporal dementia. [1,2] Each type of dementia will have particular symptoms and each will have different patterns of cognitive decline because they affect different parts of the brain. [1] Each person will experience dementia differently. In general, early symptoms in Alzheimer’s Disease are memory impairment and decline in executive function, and progression appears to be slower than other types of dementia but as the disease progresses a person will have global cognitive decline. [2] Early signs of vascular dementia can be a decline in attention and executive function. Dementia caused by Lewy Bodies is similar to Alzheimer’s Disease in that it appears to progress more slowly, however there is less decline in language and visuospatial cognitive functions. [2] Frontotemporal dementia has the most rapid progression, particularly in language and executive functioning. [2] In all types of dementia as the disease progresses the care needs of the person with dementia also increase and the advanced stages of dementia are often associated with significant symptom burden and high palliative care needs. [3] Advanced dementia, also referred to as severe dementia or end-stage dementia is defined as the stage of the disease where a person is totally dependent on others. [4]

Prevalence

As the community ages, dementia is becoming increasingly common. There are around 50 million people living with dementia across the world; in Australia the estimated prevalence in 2012 was around 298,000 persons, with this predicted to rise to 900,000 by 2050. [5,6] In 2017 dementia became the second leading cause of death in Australia. In 2016 and 2017 it was the leading cause of death among women in Australia. [7] In 2015 dementia was the fourth leading cause of disease and injury burden in Australia, with approximately 95 000 people hospitalised in Australia in 2016-17 with at least one diagnosis of dementia. [8]

Prognosis and Need for Palliative Care

Dementia caused by Alzheimer’s disease, vascular dementia, Lewy body disease or frontotemporal dementia, is a neurocognitive disorder characterised by impaired executive functioning, loss of memory, attention, visuospatial functioning, language, and as the disease progresses physical functional decline. [2,9] The diagnosis of dementia may not occur until sometime after the first symptoms present themselves. With the four main types of dementia cognitive decline can occur at different rates. While early identification and treatment strategies can delay the progression of symptoms, dementia is a progressive, life-limiting illness. Advanced dementia is characterised by severe cognitive decline, the loss of the ability to communicate verbally, functional dependence, incontinence and dysphagia. [4] People with advanced dementia are at an increased risk of infections and are often chair or bed bound placing them at high risk for pressure ulcers. [4] Advanced dementia can be diagnosed and staged by using a validated tool and corresponds to stage 6d or above on the Functional Assessment Staging Test (FAST), CDR-3 (severe) on the Clinical Dementia Rating Scale (CDR) or stage 7 on the Global Deterioration Scale (GDS). [4]

There are no specific prognostic tools for dementia and predicting mortality can be difficult. [10] Severity of dementia is predictive of life expectancy, with a very high mortality rate for those diagnosed with advanced dementia. [4] The presence of multimorbidity negatively impacts mortality, increases functional decline and symptom burden. [11] Often dementia is not recognised as a terminal illness and so timely discussions regarding prognosis are important for people with dementia and their families. [10] 

There is an emphasis, both in Australia and globally, to improve early diagnosis, provide better information and support to those with dementia and their families and to improve end of life care. [6,10] The European Association for Palliative Care has developed a definition for optimal palliative care in dementia as distinct from palliative care in other groups. [10] This work focuses on the importance of prognostication, the avoidance of aggressive treatments and the maximisation of comfort as the disease advances. [10,12] Unlike other conditions, such as cancer, dementia does not have a curative phase and so managing symptoms is the central element to managing the condition. Referral to palliative care services may be useful if the person has complex symptom control needs or they are dying. [4]
Guidelines for the care of people with dementia are available to assist in point of care decision making and some of these include palliative care specific guidance. [13,14] 

Decision Making

The diagnosis of dementia in its early stages provides a potential opportunity for patients and their carers to undertake advance care planning. Since dementia impairs decision making and communication as it progresses the need for advance care planning is promoted, in order to allow the person to influence their future care decisions at a time while they still have capacity. [15] [See CareSearch section Advance Care Planning]. A recent systematic review examined the effectiveness of advanced care plans in improving end of life outcomes for people with dementia. Many of the studies included in this review were set in residential care facilities and included people with relatively advanced disease, which the authors felt precluded the involvement of the person with dementia. [15] The impact on the outcomes for the patient were difficult to compare and there remains limited evidence that advance care planning influences the type of care that patients actually receive. [15] There is a need for further research in this area, particularly around the inclusion of people with dementia. Once the condition has advanced and the person is no longer capable of decision making then the use of Advance Directives, either instructional or those that appoint a substitute decision maker is appropriate. [16]

Symptom Management

People with advanced dementia have higher care needs and the symptoms experienced can be very similar to those with advanced cancer. Managing symptoms can be challenging as communication barriers increase with the progression of dementia and the presence of other health conditions is not uncommon. While this section focuses on managing symptoms associated with advanced dementia it is worth noting that the presence of dementia may complicate or influence the management of symptoms associated with other conditions that the person may have. [11] The most common symptoms noted in the evidence associated with advanced dementia are pain, neuropsychiatric symptoms, such as depression and agitation, cognitive decline and issues with eating and swallowing. [4] While some symptoms are more common than others, there are commonalities among all end-stage diseases and symptom identification and management should be centred on the individual’s needs. [17]

Assessing and managing symptoms can be challenging in this group and under treatment of symptoms is common in people with advanced dementia. [3,4,10,18] As with other conditions at the end of life, care should be taken to consider the benefit of any medication and deprescribing may benefit the person with dementia by reducing unnecessary side effects. [19] Over treatment with burdensome treatments around the time of death has been widely reported - including antibiotics, enteral feeding and unnecessary hospitalisations. [18] The Clinical Evidence Patient Management pages in CareSearch include topics covering the most common symptoms experienced by patients in palliative care and some of these pages include a discussion about managing symptoms in people with dementia. The following section will focus on clinical practice and evidence of the most common symptoms experienced by patients who have advanced dementia.

Pain

The ability to assess pain is affected by dementia as patients are often no longer able to self-report their pain. [20] Barriers to pain assessment include lack of recognition of pain, lack of staff training and lack of use of assessment tools. [21] There are many validated behavioural assessment tools available to help health care professionals and informal carers assess pain in non-verbal adults. [22,23] These include the Pain in Advanced Dementia (PAINAD) [24] and Doloplus 2. [25] The Abbey pain scale remains popular in both Australia and the UK yet there has been limited research into validating this tool. [22] Once a tool has been chosen its use should be continued in follow up assessments. The choice of analgesics should be based on the individual person’s presenting pain severity and history.

Neuropsychiatric Symptoms

These symptoms include depression, psychosis, agitation and delirium and are common in people with advanced dementia. Neuropsychiatric symptoms can cause significant carer distress and result in rapid functional decline. [26] Strategies for managing these symptoms include non-pharmacological and pharmacological approaches. Non-pharmacological treatment strategies, such as music therapy or physical activity should be used in the first instance. [27] A recent systematic review found the use of anti-psychotics not recommended for the management of psychosis or agitation unless the symptoms are so severe the person is at risk of harming themselves or others. [27] Other medication approaches such as anti-depressants may have some benefit, but the length of time required to reach therapeutic effect may limit usefulness for the patient with advanced dementia. [26,28] See pages in CareSearch Delirium and Depression.

The recently published Royal Commission into Aged Care Interim Report reviewed the use of restrictive practices in aged care, which it defines as physical or pharmacological interventions that restrict a person’s ability to move or make decisions. The Commissioners acknowledged the serious impact these practices have on people and made recommendations about these practices.

Eating and Swallowing Problems

People with advanced dementia commonly develop eating and swallowing problems. [14,29] Evidence based guidance is available for safe management of patients with swallowing difficulties in advanced dementia. [14] Assessment by a speech pathologist may be necessary to establish the severity of dysfunction. [13] Enteral feeding should be considered if dysphagia is transient but is not recommended in advanced dementia where dysphagia or anorexia is a symptom of the conditions severity. [13,14] 

Infection

Infections are common in people with advanced dementia. [29] If a person with advanced dementia has signs of an infection then a clinical assessment should be undertaken. [13] The use of antibiotics may contribute to the treatment burden for a person with advanced dementia and may not contribute to their comfort. [29] A decision should be made about the utility of treating infections on an individual basis.

Evidence Gap

  • Research related to palliative care needs in dementia has been conducted in residential care settings rather than in the community. Studies that test interventions to improve care, that compare different settings of care, or that develop and validate assessment tools and outcome measures, are needed. [26]
  • Many people do not perceive dementia as a terminal illness, so the use of advance care planning and how they influence care, and the need for structured processes for timely decision-making by patients and caregivers, are areas for study. [15]
  • The impact of dementia on care needs of people with co-occurring chronic conditions requires further research. [11]
  • Pain assessment in patients who are unable to communicate or have impaired cognition is a challenge. A number of assessment tools exist but all require additional validation. There is a need for further research in this area. [20]
  • Evidence about issues affecting caregivers is emerging, but more is needed to understand effective interventions and outcomes for this population. See CareSearch Carers pages.
  1. Widera E, Bernacki R. Dementia. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: Oxford University Press; 2015.
  2. Smits LL, van Harten AC, Pijnenburg YA, Koedam EL, Bouwman FH, Sistermans N, et al. Trajectories of cognitive decline in different types of dementia. Psychol Med. 2015 Apr;45(5):1051-9. doi: 10.1017/S0033291714002153. Epub 2014 Sep 17.
  3. Schmidt H, Eisenmann Y, Golla H, Voltz R, Perrar KM. Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes. Palliat Med. 2018 Mar;32(3):657-667. doi: 10.1177/0269216317746571. Epub 2017 Dec 13.
  4. Murphy E, Froggatt K, Connolly S, O'Shea E, Sampson EL, Casey D, et al. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev. 2016 Dec 2;12:CD011513. doi: 10.1002/14651858.CD011513.pub2.
  5. Australian Institute of Health and Welfare (AIHW). Dementia in Australia. Canberra; AIHW: 2012. Cat. no. AGE 70.
  6. World Health Organization (WHO). Global action plan on the public health response to dementia 2017-2025. Geneva (CH); WHO: 2017.
  7. Australian Institute of Health and Welfare (AIHW). Deaths in Australia [Internet]. 2019. [updated 2019 Jul 17; cited 2019 Dec 11].
  8. Australian Institute of Health and Welfare (AIHW). Hospital care for people with dementia 2016-17. Canberra; AIHW: 2019. Cat. no. AGE 94.
  9. Kapasi A, DeCarli C, Schneider JA. Impact of multiple pathologies on the threshold for clinically overt dementia. Acta Neuropathol. 2017 Aug;134(2):171-186. doi: 10.1007/s00401-017-1717-7. Epub 2017 May 9.
  10. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014 Mar;28(3):197-209. Epub 2013 Jul 4.
  11. Snowden MB, Steinman LE, Bryant LL, Cherrier MM, Greenlund KJ, Leith KH, et al. Dementia and co-occurring chronic conditions: a systematic literature review to identify what is known and where are the gaps in the evidence? Int J Geriatr Psychiatry. 2017 Apr;32(4):357-371. doi: 10.1002/gps.4652. Epub 2017 Feb 1.
  12. Amador S, Sampson EL, Goodman C, Robinson L; SEED Research Team. A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia. Palliat Med. 2019 Apr;33(4):415-429. doi: 10.1177/0269216319834227. Epub 2019 Mar 11.
  13. Guideline Adaptation Committee. Clinical Practice Guidelines and Principles of Care for People with Dementia (1.01MB pdf). Sydney: Guideline Adaptation Committee; 2016.
  14. The National Institute for Health and Care Excellence (NICE). Dementia: assessment, management and support for people living with dementia and their carers [Internet]. London: NICE; 2018 [cited 2019 Dec 13]. (Clinical guideline [NG97]).
  15. Dixon J, Karagiannidou M, Knapp M. The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion. J Pain Symptom Manage. 2018 Jan;55(1):132-150.e1. doi: 10.1016/j.jpainsymman.2017.04.009. Epub 2017 Aug 5.
  16. Bryant J, Turon H, Waller A, Freund M, Mansfield E, Sanson-Fisher R. Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: A systematic review. Palliat Med. 2019 Mar;33(3):262-273. doi: 10.1177/0269216318801750. Epub 2018 Sep 27
  17. Moens K, Higginson IJ, Harding R; EURO IMPACT. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage. 2014 Oct;48(4):660-77. Epub 2014 May 5.
  18. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis. 2010;22(1):37-55.
  19. Walsh KA, Dennehy R, Sinnott C, Browne J, Byrne S, McSharry J, et al. Influences on Decision-Making Regarding Antipsychotic Prescribing in Nursing Home Residents With Dementia: A Systematic Review and Synthesis of Qualitative Evidence. J Am Med Dir Assoc. 2017 Oct 1;18(10):897.e1-897.e12. doi: 10.1016/j.jamda.2017.06.032. Epub 2017 Aug 12.
  20. Bullock L, Bedson J, Jordan JL, Bartlam B, Chew-Graham CA, Campbell P. Pain assessment and pain treatment for community-dwelling people with dementia: A systematic review and narrative synthesis. Int J Geriatr Psychiatry. 2019 Jun;34(6):807-821. doi: 10.1002/gps.5078. Epub 2019 Apr 8.
  21. McAuliffe L, Nay R, O'Donnell M, Fetherstonhaugh D. Pain assessment in older people with dementia: literature review. J Adv Nurs. 2009 Jan;65(1):2-10.
  22. Schofield P. The Assessment of Pain in Older People: UK National Guidelines. Age Ageing. 2018 Mar 1;47(suppl_1):i1-i22. doi: 10.1093/ageing/afx192.
  23. Tapp D, Chenacher S, Gérard NPA, Bérubé-Mercier P, Gelinas C, Douville F, et al. Observational Pain Assessment Instruments for Use With Nonverbal Patients at the End-of-life: A Systematic Review. J Palliat Care. 2019 Jan 13:825859718816073. doi: 10.1177/0825859718816073. [Epub ahead of print]
  24. Lukas A, Hagg-Grün U, Mayer B, Fischer T, Schuler M. Pain assessment in advanced dementia. Validity of the German PAINAD-a prospective double-blind randomised placebo-controlled trial. Pain. 2019 Mar;160(3):742-753. doi: 10.1097/j.pain.0000000000001430.
  25. Lee EE, Chang B, Huege S, Hirst J. Complex Clinical Intersection: Palliative Care in Patients with Dementia. Am J Geriatr Psychiatry. 2018 Feb;26(2):224-234. doi: 10.1016/j.jagp.2017.06.015. Epub 2017 Jun 29.
  26. Bartley MM, Suarez L, Shafi RMA, Baruth JM, Benarroch AJM, Lapid MI. Dementia Care at End of Life: Current Approaches. Curr Psychiatry Rep. 2018 Jun 23;20(7):50. doi: 10.1007/s11920-018-0915-x.
  27. Watt JA, Goodarzi Z, Veroniki AA, Nincic V, Khan PA, Ghassemi M, Thompson Y, Tricco AC, Straus SE. Comparative Efficacy of Interventions for Aggressive and Agitated Behaviors in Dementia: A Systematic Review and Network Meta-analysis. Ann Intern Med. 2019 Oct 15. doi: 10.7326/M19-0993. [Epub ahead of print]
  28. Asmer MS, Kirkham J, Newton H, Ismail Z, Elbayoumi H, Leung RH, Seitz DP. Meta-analysis of the prevalence of major depressive disorder among older adults with dementia. J Clin Psychiatry. 2018 Jul 31;79(5). pii: 17r11772. doi: 10.4088/JCP.17r11772.
  29. Mitchell SL. Advanced Dementia. N Engl J Med. 2015 Jun 25;372(26):2533-40. doi: 10.1056/NEJMcp1412652.

Last updated 03 February 2020