Psychosocial Interventions in Dementia Care

It is probably not difficult for anyone to understand that the term psy­chosocial is a combination of the words psychological and social. Despite the simple explanation of the word itself, defining what psychosocial interventions exactly are is not so simple. In dementia literature several definitions could be found for psychosocial interventions and no abso­lute criteria exist to determine whether a certain intervention for people with dementia should be classified as psychosocial or not. Although psychosocial interventions are always nonpharmacological, nonphar- macological interventions are not necessarily psychosocial. They should not simply be seen as an alternative to drugs. Whereas pharmacologi­cal treatments are developed to fit symptoms of a disease, psychosocial interventions should fit the person and caregiver who suffer from dis­ease symptoms.

The aim of psychosocial interventions is to optimize the quality of life of people with dementia and their caregivers and could be directed to the patient, the caregiver, or both. Psychosocial interventions could be defined as

Interventions usually involving interaction between people, to sup­port cognition, emotion, personal relationships and a sense of con­trol in people with dementia and their family caregivers, through valued, meaningful activity and social integration.1

Psychosocial interventions became part of dementia treatment in the 1970s. At first interventions focused on the functional symptoms of the disease aiming at rehabilitation and compensation of functioning. Later psychosocial interventions became more emotion-oriented, focusing on the person with dementia and his or her own experiences and coping strategies. These days psychosocial interventions focus on the person with dementia as a whole at any stage of the disease, taking into account the persons functional capacities and subjective experiences and feelings.

Theoretical models are often used to explain and explore coping with and adaptation to dementia symptoms. A popular model that is used to develop new psychosocial treatment strategies is the stress-coping model of Lazarus and Folkman (1984) . In this model feelings of stress are explained by the way a person appraises a stressful situation and the extent to which he or she feels capable of coping with it. Stress is consid­ered a product of the interplay between the environment and the person and reducing stress could be achieved by changing a person’s perception of stressors and providing strategies to cope (for further reading on psy­chosocial models see Finnema et al. 2000).

To date no treatment exists that can cure or at least stop progression of any type of dementia. Logically, the treatments available for people with dementia and their caregivers focus on postponing cognitive decline as long as possible, alleviating behavioral and psychological symptoms dur­ing the course of the disease, and alleviating stress of caregivers. Psycho­social interventions could be effective in treating symptoms and problems related to dementia.

Professionals working in dementia care often use clinical guidelines to help them decide which treatment is most appropriate in the case of specific symptoms or situations. In many countries dementia guidelines are avail­able for geriatricians, neurologists, nurses, general practitioners, and other professionals working in dementia care. Guidelines ideally summarize the scientific evidence and best practice that is currently available and most dementia guidelines emphasize the importance of psychosocial interven­tions in the treatment of people with dementia and their caregivers. Many guidelines even recommend that psychosocial interventions should be the first choice when treating behavioral and psychological disease symptoms. The difficulty with recommendations on psychosocial interventions, how­ever, is that these are often stated rather generally. Whereas a recommen­dation for a pharmaceutical could be very clear about the dose that should be given, for how long, and when the pharmaceutical treatment should be stopped, this is far more difficult for a psychosocial intervention.

Psychosocial interventions interfere with the interaction between a person’s psychological state and social environment. Although the symptom(s) to be treated could be the same, the psychological state and social environment differ for each person with dementia. It is up to the healthcare professional to match the situation of a single person with the most appropriate psychosocial intervention. Unfortunately, directions on how to individualize psychosocial interventions are not provided by most dementia guidelines. Yet, treatment success largely depends on a person­alized approach.

Another difficulty for dementia guidelines is that scientific evidence for the effectiveness of psychosocial interventions in dementia care is growing fast. It could take months to years to develop a high-quality and evidence- based guideline, and by the time it is published new evidence is already available. Dementia guidelines should therefore be updated every few years to keep up with scientific evidence but this is done not that often.

The aim of this post on psychosocial interventions in dementia care is to summarize current knowledge and evidence for the use of psycho­social interventions in dementia care. It is not meant to give a full and systematic overview of all available evidence but to show the broad range of effects that psychosocial interventions could have in the treatment of behavioral, cognitive, and functional symptoms of people with dementia and the treatment of family caregivers.

Problems in dementia care are diverse and dementia-care services and organizations should provide access to a range of psychosocial inter­ventions that can be personalized to individual patients and caregivers. Directions on how to personalize psychosocial interventions and the basic outline of a care plan are given at the end of this post. These direc­tions are useful for professional caregivers as well as family caregivers, and apply to the different settings where people with dementia reside, at home, day care, residential care, or nursing home.

Psychosocial interventions described in dementia literature comprise a great variety of strategies and techniques and are used to manage demen­tia symptoms during the whole course of the disease. Psychosocial treat­ments could start right after diagnosis and be used till the end stage of the disease. Psychosocial interventions are available that help people with dementia to cope after they have received the diagnosis and people are still aware of their memory problems, or teach them how to use memory
aids. When the disease progresses interventions could focus on meeting the needs of the person with dementia regarding social and recreational activities, self-care, and daily structure. At the more severe stages inter­ventions could help to ease behavioral disturbances and stimulate interac­tion with others.

Scientific evidence for the effectiveness of psychosocial interventions in the treatment of dementia symptoms is scarce when applying the “gold standard” of randomized controlled trials (RCTs). The Cochrane Library,2 which includes systematic reviews and meta-analyses about the efficacy and effectiveness of treatments for many diseases and conditions, is con­sidered a reliable source of evidence-based practice and used as such by many healthcare professionals. Systematic reviews for different psychoso­cial interventions in dementia care could be found in this database but for all these interventions evidence is inconclusive.

This lack of evidence is caused by insufficient high-quality research and not because psychosocial interventions are found to be ineffective. The interventions for which some evidence is available show positive results in favor of the psychosocial intervention but more high-quality studies are needed. Negative effects of interventions are seldom reported as side effects, contrary to most pharmacological interventions used in dementia care. Personal privacy and ethical aspects could be an issue when using some psychosocial interventions, like tracking devices or subjective barri­ers for people who wander or certain sensory stimulation techniques.

The effectiveness for specific psychosocial interventions is hard to prove not only because RCTs are difficult to conduct but also because it is increasingly recognized that psychosocial care should be tailor made. Finding no effects or even undesired effects from psychosocial interven­tions could indicate that the patient’s needs and preferences did not match the specific intervention. For instance, some people prefer doing things alone or being more physically active whereas others prefer group activi­ties or like to listen to music. It is often stated in study reports of psycho­social interventions that although no overall group effect was found there seemed to be a subgroup within the study sample who benefited from that specific intervention.

Evidence for the effectiveness of one standard package of psychosocial interventions that can be recommended to all people with dementia will probably never be found. The evidence for tailored psychosocial interven­tions is growing rapidly. During the last decade, promising effects have been described in systematic reviews and papers reporting high-quality randomized controlled trials. An overview of these findings is described here.