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Person-centered care in dementia: are we there yet?

Interest in psychosocial research in people living with dementia and their caregivers is growing. Tailored, person-centered therapies have shown considerable benefits across many aspects of dementia management, from cognition and behavior, to long-term care. Delegates at the AAIC heard how psychological, social, and environmental interventions are changing lives for the better

For people living with dementia, psychosocial or “non-pharmacological” therapies have been developed with the goal of preventing or relieving behavioral and psychological symptoms, and improving relationships and wellbeing.1, 2

Psychosocial interventions are not disease-modifying, Professor Henry Brodaty (UNSW Sydney and Centre for Healthy Brain Ageing, Australia) explained to delegates at the AAIC in Chicago, but provide a person-centered approach to dementia care.

Person-centered therapy is effective in dementia    

A range of cognitive and behavioral interventions have been studied in people living with dementia. A recent systematic review concluded that moderate-high intensity, multi-component exercise improved physical and cognitive function.3 Small benefits on cognition, have also been shown alongside improvements in communication and quality of life with reminiscence therapy, which uses memory aids to encourage discussion of past activities, events and experiences.4

Cognitive stimulation uses a range of engaging activities to enhance cognitive and social functioning, and studies have demonstrated benefits on cognition, communication, social interaction and quality of life.5-7

Cognitive rehabilitation aims to improve the areas daily functioning considered most important by the person living with dementia and their caregivers

Cognitive rehabilitation aims to improve the areas daily functioning considered most important by the person living with dementia and their caregivers.8, 9 This approach appears to reduce caregiver burden and functional disability, and may even delay the need for admission to an institution.8, 10 Beneficial effects on cognition were also seen using computer-based cognitive rehabilitation.11

Studies of sensory and psychological interventions (e.g. light therapy, animal-assisted therapy, and music therapy) for behavioral and psychological symptoms, have shown varying degrees of effectiveness. Interventions that improved communication between care home staff and persons living with dementia allowing the individual’s wishes to be understood and acted upon (person-centered care, communication skills training, or adapted dementia care mapping), decreased agitation immediately and in the longer term (up to 6 months).12

Successful interventions benefit caregivers and people living with dementia

It is well known that caregivers experience considerable negative effects from dementia, with behavioral symptoms having a particular impact. Multi-component interventions, including those from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) project and STrAtegies for RelaTives (START), a manual-based coping strategy, have been shown to reduce caregiver depression.13, 14

In the past, caregiver interventions did not consider the potential benefits for people living with dementia but focused on the caregiver. The ‘Going to Stay at Home’ study combined residential respite care with an educational program over 5 days for 90 persons with dementia and their primary family caregiver.15 Over the next 12-months, despite deteriorating function among persons living with dementia, caregiver depression and burden remained unchanged. In parallel, both caregiver unmet needs and behavioral symptoms among persons living with dementia were reduced. Persons with dementia from the ‘Going to Stay at Home’ study were significantly less likely to be permanently admitted to a residential care home compared with those who had received routine residential respite care.

With benefits of tailored, home-based caregiver interventions being seen for both persons living with dementia and their caregivers, a number of studies are currently underway in low and middle-income countries (https://www.alz.co.uk/1066/).

Tailoring interventions and environments for long-term care

Long-term care remains one of the biggest issues in dementia care, with some countries spending up to 4.3% of gross domestic product on this in 2014.16 For those people entering nursing homes however, it is the impact on their quality of life that is possibly of greatest concern.

Interventions or environments that encourage communication and provide opportunities for social interactions between residents or with caregivers may be of considerable value

Many people living with dementia find nursing homes to be lonely places, often lacking in meaningful friendships and supportive social relationships.17 In this respect, interventions or environments that encourage communication and provide opportunities for social interactions between residents or with caregivers may be of considerable value.

The environment in which we live is important for us all, and for those living with dementia, it can have a supportive or debilitating impact. A recent set of practice recommendations for delivering patient-centered long-term care highlights the need for community, courtesy, comfort, choice, and engagement.18 Moving from traditional medical models and hospital-like institutions towards smaller, home-like settings may meet these needs, and in doing so reduce agitation and cognitive decline and improve quality of life. 

Personalized interventions remain the aim for future management models in dementia. Already dementia care is seeing a shift towards the use of goal-oriented interventions in partnership with families and care home staff, which help the person living with dementia rather than treat the symptoms.  Professor Brodaty stressed the importance of continuous therapy using a combination of complementary interventions, as well as educational, technological and training support for the family caregivers and healthcare professionals involved.

Further reading: https://progress.im/en/content/promise-person-centered-care

References
  1. Livingston et al. Br J Psychiatry. 2014;205:436.
  2. Scales et al. Gerontologist. 2018;58:S88.
  3. McDermott et al. Aging Ment Health. 2018:1.
  4. Woods et al. Cochrane Database Syst Rev. 2018;3:CD001120.
  5. Orrell et al. Br J Psychiatry. 2014;204:454.
  6. Paddick et al. Int Psychogeriatr. 2017;29:979.
  7. Woods et al. Cochrane Database Syst Rev. 2012:CD005562.
  8. Bahar-Fuchs et al. Alzheimers Res Ther. 2013;5:35.
  9. Clare. PLoS Med. 2017;14:e1002245.
  10. Amieva et al. Int Psychogeriatr. 2016;28:707.
  11. Garcia-Casal et al. Aging Ment Health. 2017;21:454.
  12. Livingston et al. Lancet. 2017;390:2673.
  13. Gitlin et al. Psychol Aging. 2003;18:361.
  14. Livingston et al. Health Technol Assess. 2014;18:1.
  15. Gresham et al. Int Psychogeriatr. 2018:1.
  16. Organisation for Economic Co-operation and Development Health Statistics (2018).
  17. Casey et al. Gerontologist. 2016;56:855.
  18. Calkins. Gerontologist. 2018;58:S114.
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