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Orchestrating Self-Care When Living with Dementia

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When a caregiver first receives the news of their loved one’s diagnosis, there is already a history of compensating for behaviors and memory change.  As a caregiver, you have already been a one-man band working alone to try and orchestrate life to resemble what it once was. Your loved one’s cognitive changes have changed the overall harmony into discordant noise.

Research shows dementia puts caregivers at risk of overburdening. You understand this. In reality, it probably was your own feeling of burden which precipitated seeking a diagnosis. Another statement which might resonate with you as a caregiver might be, “Caring for a relative or friend with dementia may lead to serious mental health problems.”1 What are the mechanisms that cause all this discord?

Caregivers report the strain of managing change.

  • Constantly having to switch caregiving strategies
  • Keeping vigil for safety and social appropriateness
  • Ongoing need to redirect or distract
  • Having others see a different side of the person
  • Knowing what to do but being unable to do it

Studies have shown a higher amount of caregiver involvement in care is significantly related to negative health outcomes for the caregiver.2 In fact, on average one hour extra of care per day was associated with a significant decrease in psychological well-being, self-rated overall health and health care use.  Caregiver variables showed association with use of more health services included: older age; being married, higher education; depression; higher functional disability needs; less activity days due to illness; more medications; more symptoms and fewer hours on duty.  

So, it is not just the dementia diagnosis affecting the harmony, but the changes and the personal variables together which produce unmanageable dynamics. The one-man band is overworked, underpaid and ready to fold.  So how do we add instruments and players to bring back harmony? 

The Journal of Holistic Nursing published a study of self-care strategies which included self-nourishment, spiritual reliance; and seeking information about dementia.4 Self nourishment might include face-to-face coaching and tailored web-based modules as were shown successful in the study “Partners in Balance.”5

Orchestrating self-care might include guided self-help internet interventions6.  Your self-care strategies might be more basic:  looking for distractions, getting rest, and discussing feelings and experiences.7 

No matter the study, all the outcomes point to the need for dementia caregivers to orchestrate self-care.  Let your New Year resolution be one of adding to your band. 

Reach beyond the familiar solo to strategies you have never tried before. Maybe it is meditation, Tai Chi, or a new internet opportunity to grow or to express.  We must grow faster than the dementia progresses in order to achieve some kind of harmony.

 

By-line:  Cate McCarty, PhD, ADC has been collaborating with Arden Courts in a variety of roles since the late 90’s.  Her background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia. Cate is now personally caring for her spouse who has an FTD diagnosis.

Footnotes

1Pot, A. M., Blom, M. M., & Willemse, B. M. (2015).  Acceptability of a guided self-help internet intervention for family caregivers: mastery of dementia, International Psychogeriatrics, 27(8): 1343-1354.

2Bremer, P., Cabrera, E., Leino-Kilpi, H., Lethin, C., Saks, K., et al. (2015).  Informal dementia care: Consequences for caregivers’ health and health care use in eight European countries, Health Policy, 119(11): 1459-1471.

3J Med Internet Res. 2017 Dec 19;19(12):e423. doi: 10.2196/jmir.7666.

Implementation of the Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Process Evaluation of a Randomized Controlled Trial.

Boots LM#1, de Vugt ME#1, Smeets CM#1, Kempen GI#2, Verhey FR#1.

I------ith dementia puts caregivers at risk of overburdening. Electronic health (eHealth) support for caregivers offers an opportunity for accessible tailored interventions. The blended care self-management program "Partner in Balance" (PiB) for early-stage dementia caregivers was executed in Dutch dementia care organizations. The program combines face-to-face coaching with tailored Web-based modules.

Participants and coaches were satisfied with the intervention, but adapting the content to specific subgroups, for example, younger caregivers, was recommended. 

---Int Psychogeriatr. 2015 Aug;27(8):1343-54. doi: 10.1017/S1041610215000034. Epub 2015 Feb 4.

Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia.

Pot AM1, Blom MM2, Willemse BM1.

oviding care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress. This study describes the acceptability of a guided self-help Internet intervention "mastery over dementia" (MoD), aimed at reducing caregivers' psychological distress

---BMC Geriatr. 2016 May 3;16:95. doi: 10.1186/s12877-016-0268-4.

Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study.

Huis In Het Veld J1, Verkaik R2, van Meijel B3,4,5, Verkade PJ6, Werkman W7, Hertogh C8, Francke A9,10.

I____Managing changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences.

Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress

--BMC Geriatr. 2015 Nov 11;15:147. doi: 10.1186/s12877-015-0145-6.

The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review.

Huis In Het Veld JG1,2, Verkaik R3, Mistiaen P4, van Meijel B5,6,7, Francke AL8,9.

 for the effectiveness of professional self-management support interventions targeting psychological wellbeing on stress and social outcomes of informal caregivers. In addition, evidence exists for the effectiveness of interventions targeting information on ability/knowledge. Limited evidence was found for the effectiveness of interventions targeting techniques to cope with memory change on coping skills and mood, and for interventions targeting information on the outcomes sense of competence and decision-making confidence of informal caregivers.

---Health Policy. 2015 Nov;119(11):1459-71. doi: 10.1016/j.healthpol.2015.09.014. Epub 2015 Oct 22.

Informal dementia care: Consequences for caregivers' health and health care use in 8 European countries.

Bremer P1, Cabrera E2, Leino-Kilpi H3, Lethin C4, Saks K5, Sutcliffe C6, Soto M7, Zwakhalen SM8, Wübker A9; RightTimePlaceCare Consortium.

A higher amount of informal care was significantly related to negative health outcomes for informal caregivers. On average, one additional hour of informal caregiving per day was associated with a decrease of psychological wellbeing and self-rated overall health by 0.16 and 0.42 index points respectively. Furthermore, one more hour of informal caregiving corresponded with increased self-stated proportion of health care use by 0.56 percentage points.

-----caregivers who were older, more educated, married, not employed, depressed, with functional disability needs, more illness-related reduced activity days, more medications, more symptoms, and fewer hours on duty per day use sed significantly more services for themselves. 

Gerontologist. 2016 Dec;56(6):1053-1061. Epub 2015 Sep 8.

Dementia Caregivers' Use of Services for Themselves.

Martindale-Adams J1,2, Nichols LO3,2, Zuber J1,2, Burns R1,4, Graney MJ1,2

d significantly more services for themselves.