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MEETING CHALLENGES TO MAXIMISE WELLBEING Research only

New Zealand Framework for Dementia Care pp 31-41

Aim

The aim is to ensure that people with dementia are supported to maximise their wellbeing and minimise the challenges they may face in living with dementia and to ensure that their families and whānau receive appropriate information, education and support so that they know when and how to access help and have the confidence to avoid or minimise challenges.

Health and social support workers will have the knowledge and confidence to manage the challenges of dementia appropriately and will have access to specialist advice and support and know when to seek it.

Everyone involved in the care and support of people with dementia will work towards reducing the stigma of dementia by maintaining a positive attitude and encouraging the people with dementia to retain their abilities and lead healthy and active lifestyles.

Good practice points

Depression and anxiety

The person with dementia: offered prevention options (social connections, stress reduction, physical activity) assessed regularly, has treatment and education.

The family and whānau: aware of depression / anxiety in dementia and the symptoms, stress reduction options offered for PWD,supported through depression episode to reduce burden

The navigator: aware of detrimental impact of depression / anxiety, ensures family know about depression/ anxiety. Educate about prevention and seeking treatment, supports family / whanau during episode. Aware of ARC option.

The health services: monitor for depression / anxiety after dementia diagnosis,use validated tool, rule out other causes for depression, GP first point of contact, ensure well-educated and timely referral/ advice is available.

Research

  • Collins, C., Copeland, B., & Croucher, M. (2011). Bipolar affective disorder Type II, apparently precipitated by donepezil (case report). International Psychogeriatrics, 23(3), 503-504.

OK

  • Butler, R., Fonseka, S., Barclay, L., Sembhi, S., & Wells, S. (1998). The mental health of nursing home residents: a New Zealand study. Aging & Mental Health, 2(1), 49-52.

Behavioural and Psychological Symptoms associated with dementia

Person with dementia: is offered comprehensive assessment, physical, sensory, medication, psychological, biographical, environmental, functional.

  • S. G., Henske, P. J., Cape, R. D. T., & Campbell, A. J. (1990). Acute confusional states and dementia in elderly: the role of volume dehydration/volume depletion, physical illness and age. Age and Ageing, 9(3), 137-146. doi:10.1093/ageing/9.3.137. ok

Theses

  • Lidiard, B. (2006) Implementing the Rating Scale for Aggressive Behaviours in the Elderly: Can it Make a Difference to Nursing Management of Aggressive Behaviours in Elderly Patients with Dementia? Master’s thesis Victoria University, School of Nursing

Wyles, C (2008 to 2011). Characteristics of vocally disruptive behaviour in patients with dementia in private hospitals and possibleinterventions. University of OtagoMHealSc (Rehabilitation) by thesis. ok

Treated with respect, positive support to alleviate symptoms, distress, unmet need.

Research

  • O'Sullivan, G. (2013). Ethical and effective: Approaches to residential care for people with dementia. Dementia: The International Journal of Social Research and Practice, 12(1), 111-121. ok
  • Manderson, D., & Schofield, V. (2005). How caregivers respond to aged-care residents’ aggressive behaviour. Kai Tiaki: Nursing New Zealand, 11(7), 18-19

Theses

  • Chin, H. (2016).How did a Music Therapy Student Work with Patients with Dementia who were Anxious and/or Agitated? Thesis, Victoria University School of Music.ok

Scally, R. (2014) Identifying Preferred Activities to Increase Engagement in Residents with Dementia:Master’s Thesis, University of Auckland. ok

Family and whanau: aware of what behaviours might occur, and how and when to seek advice. Receive education and support to reduce behaviours that distress.

Research

  • Gibson, R. H., Gander, P. H., & Jones, L. M. (2014). Understanding the sleep problems of people with dementia and their family caregivers. Dementia,13(3), 350-65.

doi: 10.1177/1471301212473884.

  • Gibson, R., Gander, P., Alpass, F., Stephens, C. (2014). The effect of caregiving status on the sleep of older New Zealanders.Australasian Journal on Ageing. 01/09/2015, Vol. 34 Issue 3, p155-159. DOI: 10.1111/ajag.12161.v

Thesis

  • Dennis, P. (2012) Involving Family Members of People with Dementia in the Music Therapy Process at a Residential Care Facility. Master’s Thesis, Music

URI:

Navigator: Aware of detrimental effects of BPSD, Educates family and whanau, helps access management, supports family, aware may need ARC

Health services: GP is first point of call (try to manage in primary care), ensure primary care and navigator accessible if BPSD, train primary care in non-pharmacological management, access specialist care quickly, specialised services provide organised response (timely, support to prevent relocation), doctors aware of legal implications /obligations, health and support workers have training to minimise and alleviate challenging behaviours.

Use of psychotropic drugs

  • Ndukwe, H. C., Wang, T., Tordoff, J. M., Croucher, M. J., & Nishtala, P. S. (2016). Geographic variation in psychotropic drug utilisation among older people in New Zealand. Australasian Journal on Ageing. Advance online publication.doi: 10.1111/ajag.12298
  • Jackson, G., Gerard, C., Minko, N., & Parsotam, N. (2014). Variation in benzodiazepine and antipsychotic use in people aged 65 years and over in New Zealand. The New Zealand MedicalJournal. 127(1396), 67-78.
  • Nishtala, P. S., McLachlan, A. J., Bell, J. S., & Chen, T. F. (2008). Psychotropic prescribing in long-term care facilities: Impact of medication reviews and educational interventions. American Journal of Geriatric Psychiatry, 16(8), 621-632. doi: 10.1097/JGP.0b013e31817c6abe
  • Greve, M., & O'Connor, D. (2005). A survey of Australian and New Zealand old age psychiatrists' preferred medications to treat behavioural and psychological symptoms of dementia (BPSD). International Psychogeriatrics / IPA, 17(2), 195-205.
  • Brodaty, H., Ames, D., Snowdon, J., Woodward, M., Kirwan, J., Clarnette, R., et al. (2005). Risperidone for psychosis of Alzheimer's disease and mixed dementia: Results of a double-blind, placebo controlled trial. International Journal of GeriatricPsychiatry, 20(12), 1153-1157.
  • Maclean, L. E., Collins. C., & Byrne E. J. (2001). Dementia with Lewy bodies treated with rivastigmine: effects on cognition, neuropsychiatric symptoms and sleep. International Psychogeriatrics,13(3), 277-288. [Case series]

Non-pharmacological approaches

Research

  • Locke, J. M., & Mudford, O. C. (2010). Using music to decrease disruptive vocalizations in a man with dementia. Behavioral Interventions, 25(3), 253-260.
  • Wyles, C. (2011) Characteristics of vocally disruptive behaviour in residents with dementia in specialist dementia care hospitals and possible interventions Master’s Thesis University of Otago

Pain Management

The person with dementia: assessed for pain if distressed behaviour changes, complaints of pain taken seriously, pharmacological and non-pharmacological options for pain relief

The family and whanau: aware it is difficult to detect pain in some people with dementia, are informed of symptoms of pain to look out for, know how to access help if pain detected

The navigator: aware of impact of pain on person with dementia and know what signs to look for, can provide or access pain management care

The health services: understand symptoms of pain in dementia, have standard approach to pain management (and thus reduce BPSD), use a validated pain scale.

Research

  • Cheung, G., & Choi, P. (2008). The use of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) by caregivers in dementia care facilities. New Zealand MedicalJournal, 121(1286), 21-29. requirements.

Alcohol and drug addiction

Person with dementia:

Is treated with dignity and respect, has access to integrated medical / psychiatric services especially in acute cases

Family and whanau: receive emotional support, know when and how to access services, have support from specialist services for court and other services to treat dual diagnosis

Navigator:

Knowledgeable and competent to support person with dementia and addictions and their family and whanau, knows how to access specialist support, access to specialist support and advice in complex legal, privacy and health and disabilityaspects of care.

Health services:

Regional approach and pathway for people with addiction and dementia, aware of presentations of addictions / dementia, early detection and intervention provides best chance for good outcome, promote healthy lifestyle to reduce dementia risk, practitioners are aware of legislation / obligations and use appropriately ( PPPR).

Transitions of care

Person with dementia: is given guidance in choice of long-term care in case needed in future, is supported through any transition of their care.

Thesis

  • Jörgensen, Diane Mary (2006) Factors influencing entry to residential care among olderpeople: Thesis, PhD Nursing University of Auckland. Factors influencing entry to residential care among older people Jörgensen, Diane Mary

Family and whanau: are able to be active care partners in care and support of the person with dementia, receive advice on what questions to ask and what to look for when choosing ARC, have access to support groups at transition points of care ( esp. entering ARC)

Research

  • Heppenstall, C., Keeling, S., Hanger, H. & Wilkinson, T. (2014). Perceived factors which shape decision-making around the time of residential care admission in older adults: a qualitative study.Australasian Journal on Ageing,33(1), 9-13.
  • Jorgensen, D;Arksey, H;Parsons, M;Senior, H;Thomas, D. (2009) Why do older people in New Zealand enter residential care rather than choosing to remain at home, and who makes that decision?Ageing International 34(1):15-32 2009. Why do older people in New Zealand enter residential care rather than choosing to remain at home, and who makes that decision?

Navigator: ensures that emotional wellbeing of person and family and whanau are supported through transition of care, ensures, when possible that person with dementia and their family /whanau receive advance warning to changes to services and transition of care, ensure information to make informed choices, encourages services to share information during transition

Health services: provide increased support during transitions, develop guidelines to for person, family, whanau to identify long-term options, enable family and whanau to be active partners in ARC, share information between services with Living Well book, appropriate consent for transfers, have procedure to apply to court for personal order/ welfare guardian under PPPR act.

  • Boyd, M;Broad, JB;Kerse, N;Foster, S;von Randow, M;Lay-Yee, R;Chelimo, C;Whitehead, N;Connolly, MJ. (2011) Twenty-year trends in dependency in residential aged care in Auckland, New Zealand: a descriptive study. Journal of theAmerican Medical Directors Association 12(7):535-540 Sep 2011Twenty-year trends in dependency in residential aged care in Auckland, New Zealand: a descriptive studyBoyd, M ; Broad, JB ; Kerse, N ; Foster, S ; von Randow, M ; Lay-Yee, R ; Chelimo, C ; Whitehead, N ; Connolly, MJ
  • Broad, J.B,;Foster, SJ;Boyd, M.,;Kerse, N.,;Lumley, T.,;Connolly, M.J., (2011) Aged Residential Care Health Utilisation Study (ARCHUS). A randomised controlled trial to reduce acute hospitalisations from residential aged care. Asia Pacific Conference of Gerontology. 2011
  • Heppenstall, CP;Wilkinson, TJ;Hanger, HC;Keeling, S. (2011)Factors related to care home admission in the year following hospitalisation in frail older adults. Age Ageing 40(4):513-516 (…we retrospectively examined predictors of care home admission, in the year following a specialist geriatric admission. Function on discharge was shown to be the strongest predictor of a change in domicile.)

Abuse and neglect

Person with dementia: is made aware they have rights, is respected and their concerns are investigated regardless of capacity

Family and whanau: are aware people with dementia are more vulnerable to abuse, helped to minimise stress, education on what is considered abuse, aware of how to report abuse or neglect, aware the person with dementia has the same rights as anyone else.

  • Peri, KA;Fanslow, JL;Hand, JE;Parsons, J (2008) Elder abuse and neglect: exploration of risk and protective factors. Families Commission -Giving New Zealand families a voice Te reo o tewhänau (Research report No. 1/08). 2008. Families Commission. 1177-3545. 1-76 abuse and neglect: exploration of risk and protective factors Peri, KA ; Fanslow, JL ; Hand, JE ; Parsons, J (Families Commission, 2008)

Navigator: recognises that people with dementia have the same rights as everyone else, aware people with dementia are more vulnerable to abuse, ensures support is in place to prevent abuse, respects view of person with dementia and treats information they give seriously, follow MOH Guidelines if abuse suspected, intervenes quickly to ensure safety of person, person with dementia is put in contact with services for elder abuse.

Guidelines

Health services: recognise that people with dementia have same rights as everyone else, are aware of increased vulnerability of people with dementia to abuse, follow MOH Intervention Guidelines, train clinical staff about elder abuse and neglect, involve mental health services and other appropriate agencies.

Carer stress and depression

Research

  • Alpass, F., Pond, R., Stephens, C., Stevenson, B., Keeling, S., & Towers, A. (2013). The influence of ethnicity and gender on caregiver health in older New Zealanders. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 68(5), 783–793. doi:10.1093/geronb/gbt060. (Ageing Research Stress of caregiving in Maori and Pakeha men and women- not specifically dementia)
  • Kirkman, A. (2011). Caring 'from duty and the heart': Gendered work and Alzheimer's disease. Women's Studies Journal, 25(1), 2-16.
  • Opie, A. (1994). The instability of the caring body: Gender and caregivers of confused older people. Qualitative Health Research, 4(1), 31-50.

Family and whanau: access to education especially re challenging behaviour, information / education on minimising carer stress,

Research

  • Gibson, R. H., Gander, P. H., & Jones, L. M. (2014). Understanding the sleep problems of people with dementia and their family caregivers. Dementia, 13(3), 350-65 doi: 10.1177/1471301212473884.

Aware of prevalence of anxiety/depression,

  • Dulin, P. L., & Dominy, J. B. (2008). The influence of feeling positive about helping among dementia caregivers in New Zealand: Helping attitudes predict happiness. Dementia, 7(1), 55-69.

No research identified on frequency of depression / anxiety in caregivers of people with dementia. (Chris Collins’ work done on UK Population)

Aware can seek more support,

Have access to interventions e.g. carer support subsidy,

Can book regular short-term respite care,

  • King, A., & Parsons, M. (2005). An evaluation of two respite models for older people and their informal caregivers. The New Zealand Medical Journal, 118(1214), 71-79. Probably relevant though no mention of dementia in abstract

Need work on ability of caregivers to access respite,

Supported to continue in social and physical activities,

No research identified on whether caregivers of people with dementia can continue with usual social and physical activities, to what extent or how.

Aware of own health and wellbeing and seek support if needed,

Research

  • Roud, H., Keeling, S., & Sainsbury, R. (2006). Using the COPE assessment tool with informal carers of people with dementia in New Zealand. New Zealand Medical Journal, 119(1237), 1-12. (P.68)

Thesis

  • Gallrach, F. (2010). Quality of Life of People with Dementia and their Informal Caregivers - A Clinical and Economic Analysis. (PhD thesis, University of Canterbury).

Receive support for grief and loss throughout the journey.

No research in this area identified (S. Jacobi’s work)

Navigator:

Aware wellbeing of family / whanau important for wellbeing of person with dementia,

Aware carer stress might indicate issues with person with dementia,

Responsive tofamily /whanau wellbeing and offers self-assessment,

Encourages support from wider family / whanau,

  • Wivell, J;Mara, D (2010),Without my faith I would break into pieces.' Supporting elder family members: Implications for social work policy and practice. Aotearoa NewZealand Social WorkReview 22(2):13-21 2010.

Encourages access to support groups.

  • Opie, A., & Brown, M. (1995). Beyond good intentions: Support work with older People. Social Policy Journal of New Zealand, 4.
  • Horrell, B., Stephens, C., & Breheny, M. (2015). Capability to care: Supporting the health of informal caregivers for older people. Health Psychology. Apr;34(4):339-48. doi: 10.1037/hea0000144. Epub 2014 Aug 11.

Health services: aware family / whanau wellbeing important for wellbeing of person with dementia.

Research

  • Brunton, M;Jordan, C;Fouche, C. (2008)Managing public health care policy: Who's being forgotten? Health Policy 88:348-358.

Ensure support and respite services are adequate to meet demand

Research

Gilmour, J. A. (2002). Dis/integrated care: family caregivers and in-hospital respite care. Journal of Advanced Nursing, 39(6), 546-553. doi:10.1046/j.1365-2648.2002.02323.x

Ensure no barriers to access, consider health needs family / whanau

  • Jorgensen, D., Parsons, M., Jacobs S.,Arksey, H. The New Zealand informalcaregivers and their unmet needs.(2010) NZMJ 25 June 2010, Vol 123 No 1317; ISSN 1175 8716 Page 11 URL: The New Zealand informal caregivers and their unmet needs Jorgensen, DM ; Parsons, MJG ; Jacobs, SP ; Arksey, H

Reducing Stigma

Research

  • Chaston D (2010) Younger adults with dementia: a strategy to promote awareness and transform perceptions Contemp Nurse. 2010 Feb-Mar; 34(2):221-9. doi: 10.5172/conu.2010.34.2.221.
  • O’Sullivan, G., Hocking, C., & Spence, D. (2014). Action research: Changing history for people living with dementia in New Zealand. Action Research, 12(1), 19-35.
  • O’Sullivan, G., Hocking, C., & Spence, D. (2014). Dementia: the need for attitudinal change. Dementia, 13(4), 483-497.

Person with dementia: is supported not to be ashamed, encouraged to live positivelyand retain abilities and do usual daily activities, actively involved in own care and support, encouraged to participate and contribute in community, participate in peer groups

Family and whanau: advised of importance person retains abilities by involvement in usual activities, advised to let person with dementia do what they can for themselves, not to make assumptions about what person can or cannot do, advised to encourage other family members to be involved to be active and socially connected.

Research

  • Zhang, Y., Hummert, M., & Garstka, T. (2002). Stereotype traits of older adults generated by young, middle-age, and older Chinese participants. Hallym International Journal of Ageing, 4(2), 119-140. (From Ageing section- younger Chinese people more positive than negative about ageing)

Navigator: ensures person and family have up-to-date information about dementia to share with others, encourages person with dementia to be active and involved in own cares, and supports wider family, supports person to be involved in community, irgainses advocacy if needed, keeps up to date

Health services: promote respect and dignity within health services, ensure equity of access for people with dementia, educate the workforces about dementia and that people can live positively with it, develop peer support groups for people with dementia,support peoplewith dementia to contribute to community

Research

  • Rodgers, V., & Gilmour, J. (2011). Shaping student nurses' attitudes towards older people through learning and experience. Nursing Praxis In New Zealand, 27(3), 13-20. ( from Ageing Section- not dementia but looking at destigmatising ageing)