Good dementia care involves assessment of a resident’s abilities, care planning and provision, strategies for addressing behavioural and communication changes, appropriate staffing patterns, and an assisted living or nursing home environment that fosters community. Values that govern this modern approach, mainly when applied to dementia care, include choice, dignity, respect, purposeful living, and self-determination. The primary areas of emphasis are prioritising the person rather than the task or disease and framing care with the wants and needs of the recipient. Some of the goals identified are generally applicable for dementia patients and their caregivers: low caregiver strain, management of behavioural symptoms, avoidance of pain and depression, as much functional independence as possible, and eventually dying with dignity.
Advance care planning (ACP) is fundamental for everyone living with dementia. It enhances choice, aids the delivery of person-centred end of life care, helps guide care when mental capacity is lost and provides support for families and carers.
Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centred goals for care, we conducted a qualitative study using focus groups of people with early-stage and dementia caregivers.
We conducted five focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analysed by two coders using deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for care.
Dementia is an incurable disorder for which traditional health outcome measures (e.g., disease remission, prolonged survival) are often unachievable or hold little meaning. Although a variety of measures have been developed that assess control of behavioural symptoms (e.g., the Neuropsychiatric Inventory1) and caregiver outcomes (e.g., strain2 and depression3), these may not capture everything that may be important to patients and their caregivers as they face the medical, behavioural, and social consequences of dementia.
Early on, the goal of dementia care may be to preserve functional status, including the ability to work (e.g., Glen Campbell performed over 100 concerts when his disease was still early). However, as the disease progresses, goals shift to maintaining the ability to live at home, maintaining mobility, controlling behavioural and psychological complications, reducing caregiver burden, and eventually ensuring a dignified, peaceful death. As a result, dementia is a disorder in which all decisions need to be considered within the context of the stage of the disease, the patient’s goals and preferences, and the potential trade-offs required to achieve them.4
Prior qualitative studies examining the health-related values of people with dementia and their family caregivers5–7 have identified care priorities within several broad categories, including social and family relationships, functional independence, safety and physical well-being, support for direct care needs and day-to-day functioning, obtaining dementia-related services, medical care, emotional well-being, autonomy and the importance of meaningful activity,8,9 and financial concerns. Previous work has also focused on understanding the care needs of the family unit of the person with dementia and identifying differences in care priorities among persons with dementia, their family caregivers, and their health care providers.11–13
One approach to measuring goal achievement in clinical care has been to use goal attainment scaling,14–, in which a patient or caregiver’s specific goals are elicited and measured. Yet little is known about whether the care priorities of people with dementia and their caregivers can be further specified as actionable goals and measured. Hence, they are helpful to researchers and clinicians. Suppose plans for dementia care can be identified and operationalised. In that case, they can be used in clinical settings as prompts to help patients and caregivers to obtain what is essential to them. In tandem, health care providers can organise care towards meeting these goals and away from achieving undesired outcomes. How well these goals are attained can also be used to measure the quality of care provided by a health system or how well different models of dementia care perform.18, 19
Participants were recruited from the UCLA health system and the UCLA Alzheimer’s and Dementia Care (ADC) Program, a comprehensive dementia care management program,20, 21 and five community-based organisations that provide dementia-related services in partnership with the UCLA ADC Program. Participants were recruited using flyers posted in clinical areas and at community-based organisations, and mailers were sent to people who indicated an interest in receiving information about research studies. Purposive sampling was used to select participants with early-stage dementia and ensure Spanish-speaking participants’ inclusion. We conducted one focus group with six people with early-stage dementia and four focus groups with 36 caregivers of people with dementia (one of the groups consisted of 14 Spanish-speaking caregivers). We conducted a semi-structured interview with one Spanish-speaking female with dementia. Participants with early-stage dementia had reported a physician diagnosis of dementia and were able to give informed consent. Caregiver participants could be unpaid family members or friends or paid caregivers and could care for a person with dementia at any stage of the disease.
Advance care planning is fundamental for everyone living with dementia. It enhances choice, aids delivery of person-centred, and provides support for families and carers.
Planning an inventory of patient- and caregiver-centred goals for dementia care. Understanding the range of essential plans is essential in shifting towards goal-oriented care.
“What are the important goals for your dementia care?” and “Why are these goals important?” Participants were ask to consider goals relating to specific domains, including medical care, social functioning, emotional well-being, physical functioning, safety, and end-of-life care. Participants were prompted to consider how their goals might change over time as the disease progressed and how a caregiver’s goals might differ from those with dementia. Good dementia care involves assessment of a resident’s abilities, care planning and provision, strategies for addressing behavioural and communication changes, appropriate staffing patterns, and an assisted living or nursing home environment that fosters community.
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