Dementia Caregiver Needs

It is important to assess the needs of dementia caregivers throughout the disease trajectory. This begins at the point of diagnosis, often before family or friends identify themselves as caregivers. and evolves and changes as dementia progresses.^1-3 As the balance of care shifts over time, the questions used to assess needs of the person with dementia and their caregiver(s) also shift (Figure).

At Diagnosis

At the point of diagnosis, the primary need of caregivers is to have accurate, understandable information about dementia, and the specific disease underlying the dementia, such as Alzheimer disease (AD). Most people think of AD as a disease affecting memory and are unaware of the communication challenges, executive dysfunction, neuropsychiatric symptoms, and other challenges that affect daily functioning as dementia progresses. These challenges are particularly difficult for caregivers to address because they limit the ability of the person with dementia to communicate their needs and to perform complex tasks previously done with ease. Helping both the person with dementia and their caregiver become aware of what to expect with disease progression with knowledge, assessment, and referral to appropriate educational resources is paramount at this stage.^3-6

As with any chronic and terminal illness, delivering a diagnosis to a person with dementia requires thoughtfulness and care. The focus at this time is necessarily on the person with dementia and the caregiver may not be present or identified at this time. If a potential caregiver is in the room, the astute clinician will assume they have questions and concerns and ask for those to be shared after the patient has first had the opportunity to share their questions and concerns. Creating this opportunity to ask questions and sharing available resources is often all caregivers can take in at this stage of disease.

There are many resources for educating individuals with dementia and their caregivers (Box), including the Alzheimer’s Association, which has a wealth of information useful not just for AD, but for multiple types of dementia. If a more specific diagnosis is given, there are other resources oriented specifically to those conditions (eg, frontotemporal dementia or Lewy body disease). Often people are diagnosed with a mixed dementia, making multiple resources appropriate and useful.

Information about the need for legal and financial planning including medical power of attorney, potential long-term care, and property arrangements should be provided. If this is not done at the time of diagnosis, it should be done at the first follow-up visit. Although early planning can be difficult for patients and their loved ones, it allows the person with dementia to be involved and express their wishes for future care and decisions. This eliminates guesswork for families and allows for the person with dementia to designate decision makers on their behalf. Early planning 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 underrepresented 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, it is important to ask caregivers how they are spending their days and what aspects of caring are presenting challenges for them. Caregivers should be asked about what help they have with caregiving. Because of the stigma associated with dementia, many caregivers are at risk for social isolation. Referrals to counseling, support groups, and social agencies may be made as needed.^10-12 Caregivers who are part of a church or a spiritual community may also find sources of support there, and clinicians can ask caregivers about their spiritual practices to connect them to such supports when available.^13-15

As individuals with dementia experience declines in executive function and communication, neuropsychiatric symptoms tend to emerge. These can be among the largest challenges for caregivers often because of low awareness that these issues are part of the dementia disease process. Yet, with understanding and evidence-based behavioral approaches, many of these can be managed successfully by caregivers. Connecting caregivers to social agencies that offer support for elders and people with dementia is useful and may provide opportunities to learn evidence-based approaches in dementia care.

In mid- and later stages of dementia, common neuropsychiatric symptoms many include repetitive questioning, rummaging through belongings, responding to visual cues out of context, restlessness, and increased roaming and other unsafe behaviors. These symptoms often require increased vigilance on the part of caregivers that is both mentally and physically exhausting.^16-20 This is likely frustrating for a caregiver if they do not understand these behaviors as part of the disease—that the person with dementia is expressing a need through behavior that they may no longer be able to express verbally. Helping the caregiver to see that there is usually a need or specific stimulus that underlies these behaviors (eg, hunger, discomfort, bathroom needs, visual and auditory stimuli, and even boredom) can be extremely helpful.

Evidence-based behavioral interventions have been shown to help improve caregiver quality of life, some of which also reduce symptom severity for persons with dementia (Table).^21-26 Interventions that are variations of person-centered care teach caregivers how to identify underlying causes of symptoms with problem-solving skills (eg, Describe-Investigate-Create-Evaluate [DICE], Treatment Routes for Exploring Agitation [TREA], Tailored Activity Programs [TAP}, and Dementia Care Mapping [DCM]).^27-32 In general, these systems provide structured approaches to problem solving—understanding why symptoms occur when they do. This approach can empower caregivers to manage symptoms with simple behavioral interventions and diminish the sense of being overwhelmed. A database of over 40 evidence-based dementia care interventions is available at https://bpc.caregiver.org/#searchPrograms. Using this database, individuals and organizations can filter and compare programs by dementia type and other characteristics as well as evidence of benefits.

When resources are not available locally, it is helpful for clinicians to understand the basics of these programs and be able to refer caregivers to websites and apps that can guide them in the use of these methods. It is important for clinicians to recognize that nonpharmacologic interventions are often the most appropriate and effective approach to reduce for neuropsychiatric given the risk and side effects of appropriate, pharmacologic treatments (See Behavioral Approaches in Dementia Care in this issue). The benefits of these programs for caregivers include reduced stress and improved health outcomes for caregivers. For persons living with dementia, these programs improves quality of life and prolongs the time before assisted living or long-term care is needed

Clinicians also play an important role in supporting caregivers to implement evidence-based care programs that address safety concerns. This includes helping to assess when driving is no longer safe or when individuals can no longer be safe out of the home by themselves. The loss of autonomy and independence is incredibly difficult for most people living with dementia and their caregivers. When caregivers can refer back to clinician recommendations—“what the doctor said”—to support and reinforce these limits at home, caregivers and person with dementia may both feel more able to respect those limitations. The caregiver may feel they have back-up, and the person living with dementia may feel supported by a team rather than emotionally upset with their family.

In Later Stages of Dementia

As dementia progresses toward late stages and higher levels of care become necessary, transitioning to full-time care or assistive living can be among the largest of the challenges caregivers face. Engaging a palliative care approach focused on preserving dignity and quality of life can be beneficial for both persons with dementia and their caregivers.^6,7,9,33-37 Whether an individual will die because of complications of the dementia, such as infection or falls or the actual disease causing the dementia, they will have dementia at the end of their life. With this understanding, accessing a palliative approach is increasingly recognized as best practice at this stage. Some hospice programs are even beginning to offer dementia care even though it can be difficult to prognosticate life expectancy for people with dementia.

Palliative care offers a whole team approach that includes social workers, clergy members, nurses, physicians, therapists and more that can benefit both patients and caregivers. For some individuals, introducing a palliative approach focused on relieving symptoms and maintaining quality of life may even be beneficial at early stages of disease progression (Figure).

Summary

Clinicians can help meet dementia caregivers needs in many ways. Perhaps most important, is the simple recognition that addressing caregivers needs improves health outcomes for the person with dementia and the person who cares for them. With that in mind, it is important to ask caregivers how they are doing; what concerns, worries, or challenges they have; and what they are doing to care for themselves and the person with dementia. Having this information allows an astute clinician to provide educational resources, make referrals to community resources and social services, share information about evidence-based caregiving methods, and incorporate a palliative approach as appropriate.