DEMENTIA CAREGIVER NEEDS - CAREGIVER NEEDS EXIST AND CAN BE ADDRESSED AT ALL STAGES OF THE DEMENTIAS. BY NANCY A. HODGSON, RN, PHD, FAAN ...

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DEMENTIA CAREGIVER NEEDS - CAREGIVER NEEDS EXIST AND CAN BE ADDRESSED AT ALL STAGES OF THE DEMENTIAS. BY NANCY A. HODGSON, RN, PHD, FAAN ...
DEMENTIA CARE
    APPROACHES

   Dementia Caregiver Needs
   Caregiver needs exist and can be addressed at all stages of the dementias.
   By Nancy A. Hodgson, RN, PhD, FAAN

                     It is important to assess the needs of demen-    care. The focus at this time is necessarily on the person with
                  tia caregivers throughout the disease trajectory.   dementia and the caregiver may not be present or identified at
                  This begins at the point of diagnosis, often        this time. If a potential caregiver is in the room, the astute clini-
                  before family or friends identify themselves as     cian will assume they have questions and concerns and ask for
                  caregivers. and evolves and changes as demen-       those to be shared after the patient has first had the opportu-
                  tia progresses.1-3 As the balance of care shifts    nity to share their questions and concerns. Creating this oppor-
   over time, the questions used to assess needs of the person        tunity to ask questions and sharing available resources is often
   with dementia and their caregiver(s) also shift (Figure).          all caregivers can take in at this stage of disease.
                                                                         There are many resources for educating individuals with
   At Diagnosis                                                       dementia and their caregivers (Box), including the Alzheimer’s
      At the point of diagnosis, the primary need of caregiv-         Association, which has a wealth of information useful not just
   ers is to have accurate, understandable information about          for AD, but for multiple types of dementia. If a more specific
   dementia, and the specific disease underlying the dementia,        diagnosis is given, there are other resources oriented specifi-
   such as Alzheimer disease (AD). Most people think of AD as         cally to those conditions (eg, frontotemporal dementia or
   a disease affecting memory and are unaware of the commu-           Lewy body disease). Often people are diagnosed with a mixed
   nication challenges, executive dysfunction, neuropsychiatric       dementia, making multiple resources appropriate and useful.
   symptoms, and other challenges that affect daily functioning          Information about the need for legal and financial plan-
   as dementia progresses. These challenges are particularly dif-     ning including medical power of attorney, potential long-
   ficult for caregivers to address because they limit the ability    term care, and property arrangements should be provided.
   of the person with dementia to communicate their needs             If this is not done at the time of diagnosis, it should be
   and to perform complex tasks previously done with ease.            done at the first follow-up visit. Although early planning
   Helping both the person with dementia and their caregiver          can be difficult for patients and their loved ones, it allows
   become aware of what to expect with disease progression            the person with dementia to be involved and express their
   with knowledge, assessment, and referral to appropriate            wishes for future care and decisions. This eliminates guess-
   educational resources is paramount at this stage.3-6               work for families and allows for the person with dementia
      As with any chronic and terminal illness, delivering a diag-    to designate decision makers on their behalf. Early planning
   nosis to a person with dementia requires thoughtfulness and        also allows time to work through the complex legal and
                                                                      financial issues that are involved in long-term care.7
                                                                         It is important to note that for some populations, diagnosis
                                                                      may occur further along in disease progression. This includes
                                                                      underserved and high-risk communities including underrep-
                                                                      resented minority groups.4,8,9 As such addressing caregivers’
                                                                      needs also requires careful attention to cultural norms and
                                                                      psychosocial resources of the specific individual and family.3,8,9

                                                                      During Follow-Up Care
                                                                          As the needs of the person with dementia increase over
                                                                      time, so too do the needs of caregivers. During follow-up visits,
   Figure. As dementia progresses, so too do caregiver needs. As      it is important to ask caregivers how they are spending their
   modeled here, efforts to maintain cognitive reserve and treat or   days and what aspects of caring are presenting challenges for
   slow the disease gradually decrescendo, palliative care needs      them. Caregivers should be asked about what help they have
   increase and become essential, focused on symptomatic treat-       with caregiving. Because of the stigma associated with demen-
   ment to preserve quality of life for as long as possible.          tia, many caregivers are at risk for social isolation. Referrals to

48 PRACTICAL NEUROLOGY JUNE 2021
DEMENTIA CAREGIVER NEEDS - CAREGIVER NEEDS EXIST AND CAN BE ADDRESSED AT ALL STAGES OF THE DEMENTIAS. BY NANCY A. HODGSON, RN, PHD, FAAN ...
DEMENTIA CARE
                                                                                                                       APPROACHES

           Box. Selected Online Educational                         by caregivers. Connecting caregivers to social agencies that
                                                                    offer support for elders and people with dementia is use-
           Resources for Dementia                                   ful and may provide opportunities to learn evidence-based
 Alzheimer’s Association www.alz.org                                approaches in dementia care.
   Educational information and other resources for people              In mid- and later stages of dementia, common neuropsy-
   with all types of dementia, including a helpline (800-729-       chiatric symptoms many include repetitive questioning, rum-
   3900), available 24 hours a day, 7 days a week.                  maging through belongings, responding to visual cues out of
 Benjamin Rose Institute on Aging benrose.org
                                                                    context, restlessness, and increased roaming and other unsafe
   A nonprofit providing services to people in Ohio that also has
                                                                    behaviors. These symptoms often require increased vigilance
   several useful online tools.
                                                                    on the part of caregivers that is both mentally and physically
                                                                    exhausting.16-20 This is likely frustrating for a caregiver if they
 Family Caregiver Alliance www.caregiver.org                        do not understand these behaviors as part of the disease—
   A community organization providing online resources to           that the person with dementia is expressing a need through
   anyone from anywhere. Individuals can answer an online           behavior that they may no longer be able to express verbally.
   questionnaire and receive tailored resources from FCA staff.     Helping the caregiver to see that there is usually a need or
 Lewy Body Dementia Association www.lbda.org                        specific stimulus that underlies these behaviors (eg, hunger,
   Information and resources specific to Lewy body dementia.        discomfort, bathroom needs, visual and auditory stimuli, and
                                                                    even boredom) can be extremely helpful.
 National Institute on Aging (NIA) www.nia.nih.gov
                                                                        Evidence-based behavioral interventions have been shown
   Part of the US Department of Health and Human Services
                                                                    to help improve caregiver quality of life, some of which
   National Institute of Health, provides information on health
                                                                    also reduce symptom severity for persons with dementia
   and disease for elders and their caregivers.
                                                                    (Table).21-26 Interventions that are variations of person-
 National Association of Area Agencies on Aging                     centered care teach caregivers how to identify underlying
 www.n4a.org                                                        causes of symptoms with problem-solving skills (eg, Describe-
   A nonprofit network of local agencies providing services for     Investigate-Create-Evaluate [DICE], Treatment Routes for
   elders in the community, including those with dementia.          Exploring Agitation [TREA], Tailored Activity Programs [TAP},
 Research Institute on Aging By Us For Us Guides                    and Dementia Care Mapping [DCM]).27-32 In general, these
 the-ria.ca/resources/by-us-for-us-guides/                          systems provide structured approaches to problem solv-
   From the Research Institute on Aging at the University of        ing—understanding why symptoms occur when they do.
   Waterloo in Canada, these guides, available for free download    This approach can empower caregivers to manage symptoms
   or for purchase in print, were created by a group of people      with simple behavioral interventions and diminish the sense
   living with dementia and their care partners.                    of being overwhelmed. A database of over 40 evidence-based
                                                                    dementia care interventions is available at https://bpc.caregiv-
 The Association for Frontotemporal Dementia                        er.org/#searchPrograms. Using this database, individuals and
 www.theaftd.org                                                    organizations can filter and compare programs by dementia
   Information specific to frontotemporal dementia.                 type and other characteristics as well as evidence of benefits.
 A Quick Look at Alzheimer’s aboutalz.org                              When resources are not available locally, it is helpful for
   A series of 5 videos, each 2 to 3 minutes long, that provide     clinicians to understand the basics of these programs and be
   introductory education in a highly digestible format.            able to refer caregivers to websites and apps that can guide
                                                                    them in the use of these methods. It is important for clinicians
counseling, support groups, and social agencies may be made         to recognize that nonpharmacologic interventions are often
as needed.10-12 Caregivers who are part of a church or a spiri-     the most appropriate and effective approach to reduce for
tual community may also find sources of support there, and          neuropsychiatric given the risk and side effects of appropri-
clinicians can ask caregivers about their spiritual practices to    ate, pharmacologic treatments (See Behavioral Approaches in
connect them to such supports when available.13-15                  Dementia Care in this issue). The benefits of these programs
   As individuals with dementia experience declines in              for caregivers include reduced stress and improved health
executive function and communication, neuropsychiatric              outcomes for caregivers. For persons living with dementia,
symptoms tend to emerge. These can be among the larg-               these programs improves quality of life and prolongs the time
est challenges for caregivers often because of low awareness        before assisted living or long-term care is needed
that these issues are part of the dementia disease process.            Clinicians also play an important role in supporting caregiv-
Yet, with understanding and evidence-based behavioral               ers to implement evidence-based care programs that address
approaches, many of these can be managed successfully               safety concerns. This includes helping to assess when driving

                                                                                                    JUNE 2021 PRACTICAL NEUROLOGY 49
DEMENTIA CARE
    APPROACHES

    TABLE. EVIDENCE-BASED CARE INTERVENTIONS THAT IMPROVE CAREGIVERS’ QUALITY OF LIFE
           Program                                   Delivery model                                                          Results of intervention
   Active Caregiving:          Weekly 2-hour session for 4 weeks led by trained layper-                        Decreased caregiver depression symptoms and
   Empowering Skills (ACES)    son professional or paraprofessional                                            improved quality of life for caregiver
   Adult Day Services Plus     Skills training and check-ins from trained professional or                      Decreased caregiver depression symptoms,
   (ADS Plus)                  paraprofessional for skills-training, education, and resourc-                   improved caregiver confidence and skills, and
                               es. Up to 8 sessions (15 minutes-1 hour) over 1-year                            improved caregivers' quality of life.
   Mindfulness Training for    Weekly 90-minute sessions for caregivers over 8 weeks                           Decreased depression symptoms, improved
   Patients with Progressive   led by professional or paraprofessional, focused on                             confidence and skills, quality of life, and health
   Cognitive Decline and       meditation, movement, yoga                                                      for caregivers; also improved depression symp-
   their Caregivers Program                                                                                    toms, severity of other symptoms, stress, and
                                                                                                               quality of life for person with dementia
   REACH TX                    4 in-person sessions for caregiver and person with                              Decreased depression symptoms, improved
                               dementia with professional or paraprofessional over                             confidence and skills, quality of life, and health
                               6-month period                                                                  for caregivers; decreased symptom severity and
                                                                                                               increased independence for activities of daily liv-
                                                                                                               ing for person with dementia
   Savvy Caregiver             Weekly 2-hour session for 6 weeks in-person or online                           Decreased depression symptoms, improved
                               from trained layperson, paraprofessional or professional                        confidence and skills, quality of life, and health
                               focused on caregiving knowledge and skills, coping with                         for caregivers; decreased symptom severity for
                               stress, and encouraging persons living with dementia to                         person with dementia
                               participate in daily tasks and activities.
   is no longer safe or when individuals can no longer be safe            therapists and more that can benefit both patients and
   out of the home by themselves. The loss of autonomy and                caregivers. For some individuals, introducing a palliative
   independence is incredibly difficult for most people living with       approach focused on relieving symptoms and maintaining
   dementia and their caregivers. When caregivers can refer back          quality of life may even be beneficial at early stages of dis-
   to clinician recommendations—“what the doctor said”—to                 ease progression (Figure).
   support and reinforce these limits at home, caregivers and
   person with dementia may both feel more able to respect                Summary
   those limitations. The caregiver may feel they have back-up,              Clinicians can help meet dementia caregivers needs in
   and the person living with dementia may feel supported by a            many ways. Perhaps most important, is the simple recog-
   team rather than emotionally upset with their family.                  nition that addressing caregivers needs improves health
                                                                          outcomes for the person with dementia and the person
   In Later Stages of Dementia                                            who cares for them. With that in mind, it is important to
      As dementia progresses toward late stages and higher lev-           ask caregivers how they are doing; what concerns, worries,
   els of care become necessary, transitioning to full-time care          or challenges they have; and what they are doing to care
   or assistive living can be among the largest of the challenges         for themselves and the person with dementia. Having this
   caregivers face. Engaging a palliative care approach focused           information allows an astute clinician to provide educa-
   on preserving dignity and quality of life can be beneficial            tional resources, make referrals to community resources
   for both persons with dementia and their caregivers.6,7,9,33-37        and social services, share information about evidence-
   Whether an individual will die because of complications of             based caregiving methods, and incorporate a palliative
   the dementia, such as infection or falls or the actual disease         approach as appropriate. n
   causing the dementia, they will have dementia at the end
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                                       Nancy A. Hodgson, RN, PhD, FAAN
                                       Chair and Professor of Nursing
                                       Department of Biobehavioral Health Sciences
                                       Anthony Buividas Term Chair in Gerontology
                                       University of Pennsylvania School of Nursing
                                       Philadelphia, PA

                                       Disclosures
                                       NAH reports no disclosures

54 PRACTICAL NEUROLOGY JUNE 2021
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