Caregivers and Care Settings

What is known

Home carers of people with dementia have needs that are different from, but equivalent to, those of carers for patients dying of other diseases. Their issues are often a result of trying to deal with difficult behaviours, as well as an experience of loss that is quite specific to dementia. [1,2] Bereavement issues in dementia have also been studied, and special needs can be identified in bereaved caregivers of people with dementia. [3] Anticipatory grief appears to be a significant issue for caregivers, related to their own losses as well as to the changes affecting the person with dementia. It occurs more frequently in spouse caregivers and when the person with dementia is institutionalised, and is associated with depression in caregivers, as well as with complicated grief after the person with dementia dies. [3]

Taking on the caregiving role has a range of physical and social consequences for the caregiver, including effects on finances, employment and mental health. [4,5] There is evidence to support an intervention to teach cognitive reframing for caregivers, which has been shown to reduce psychological morbidity, particularly anxiety. [6] The impact of caregiving on families and informal caregivers is significant, and their contribution to care is substantial. Family caregivers of patients with dementia provide physical, emotional and medical care for the person, and these stresses often continue after admission to an institution. [4]

Family carers for people with dementia are unprepared for many aspects of the experience. Whilst dementia is often not understood as a terminal illness by family carers, carers are often required to make end-of-life decisions on behalf of their relatives at some stage, an experience that may be very difficult. [7] The literature shows that family carer decision-making generally draws on values of quality of life, the person’s previously expressed wishes, and focuses on comfort and maintaining dignity. [2] Nonetheless the evidence also indicates that proxy decision-makers tend to select more aggressive treatment than older people would choose themselves given a diagnosis of advanced dementia. [8]

Communication with professionals is a key issue for families identified in the literature. [9] When communication fails or does not occur it tends to result in families choosing more active management of end-of-life problems. [2] Crisis decision-making is associated with distress and inappropriate interventions. Models of care using shared decision-making processes and involving ongoing open dialogue between families and staff reduce distress for family caregivers, as can encouraging a 'hands-on caring' arrangement for family members. [2] Quality palliative care provision in nursing homes is related to staffing and training, competence and the availability of timely medical support, and its availability can reduce inappropriate hospitalisation and provide support to family caregivers. [8]

Training for staff who provide care for patients with dementia at the end-of-life should focus particularly on developing communication and counselling skills [2] to help them discuss decision-making about burdensome treatments with families. [8] These treatments include tube feeding, antibiotics, and transfers to acute care settings; the alternative focus is on 'high touch' treatments that are preventive and supportive, including oral care, hand feeding and treatment of pain. [8]

Ethnicity is a factor in access to support and end-of-life care, and the literature - mainly from the US - suggests that ethnic minority communities have different experiences and expectations of palliative care. [10] The US evidence suggests a tendency to choose more aggressive end-of-life care across all minority ethnic groups, involving acute hospital admission with higher rates of resuscitation, ventilation and artificial nutrition, and less frequent decisions to withhold treatment. The reason for these differences has not been well studied. [11] There is no high-level evidence regarding the effect of ethnicity within the Australian setting, however the double disadvantage of ethnic minority status and dementia noted by Connolly et al [11] is likely to have a similar impact in the Australian setting.

The experiences and needs of family caregivers vary considerably with ethnicity, however programs are rarely tailored according to the ethnicity of caregivers, nor is evaluation of the impact of interventions according to ethnicity often addressed. [10] Cultural tailoring of programs, when done, has addressed issues such as familism, language, literacy, protecting elders, and logistical barriers to accessing care. [10]

Implications for practice

  • Family caregivers require information and ongoing communication about the prognosis of a person with dementia, and support with decision-making as the person approaches the end-of-life. [2,12]
  • Anticipatory grief and depression are prevalent in family caregivers, including spouses with a partner who is institutionalised for dementia. Identification of distressed carers may allow better support to be provided. [3] Cognitive reframing is a strategy that has been shown to be helpful. [6]
  • A palliative approach to caring for patients with advanced dementia in residential aged care settings has the goals of maximising comfort and function and reducing burdensome treatments. This approach improves residents’ quality of life, and the satisfaction of caregivers. [7] The use of palliative care guidelines, and access to specialist palliative care services, can support this approach. [12]
  • Advance care planning, including strategies to reduce transfers between settings of care, can reduce problems with continuity of care. [4,8,12]
  • Training for staff who provide care for patients with dementia at the end-of-life should focus particularly on developing communication and counseling skills [2] and avoiding inappropriate or burdensome treatments. [8]
  • Cultural issues are important in aged care, and there is a need to provide culturally sensitive supports and services. Understanding the impact of ethnicity on the experiences of caregivers and patients is important. [10,11]
  1. Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, et al. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry. 2010 Apr;25(4):329-37.
  2. Hennings J, Froggatt K, Keady J. Approaching the end of life and dying with dementia in care homes: the accounts of families. Rev Clin Geront. 2010;20(2):114-27.
  3. Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic review. Int J Geriatr Psychiatry. 2013 Jan;28(1):1-17.
  4. Lorenz K, Lynn J, Morton SC, Dy S, Mularski R, Shugarman L, et al. End-of-life care and outcomes. Evid Rep Technol Assess (Summ). 2004 Dec;(110):1-6.
  5. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003 Jun;18(2):250-67.
  6. Vernooij-Dassen M, Draskovic I, McCleery J, Downs M. Cognitive reframing for carers of people with dementia. Cochrane Database Syst Rev. 2011 Nov 9;(11):CD005318.
  7. Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011 Dec;23(10):1535-51.
  8. Volicer L. End-of-life care for people with dementia in long-term care settings. Alzheim Care Today. 2008;9(2):84-102.
  9. Ryan T. End-of-life care for people with dementia: A thematic review of familial involvement, practices and beliefs. Int J on Disabil Hum Dev. 2009;8(1):15-20.
  10. Napoles AM, Chadiha L, Eversley R, Moreno-John G. Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet? Am J Alzheimers Dis Other Demen. 2010 Aug;25(5):389-406.
  11. Connolly A, Sampson EL, Purandare N. End-of-life care for people with dementia from ethnic minority groups: a systematic review. J Am Geriatr Soc. 2012 Feb;60(2):351-60.
  12. 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.

Guidelines

Resources

Free full text overview article

  • Collins LG, Swartz K. Caregiver care. Am Fam Physician. 2011 Jun 1;83(11):1309-17.
Last updated 18 January 2017