The word dementia is an umbrella term which describes a serious deterioration in mental functions, such as memory, language, orientation and judgement. Numerous definition of dementia has been suggested. Roth proposed that it is ‘an acquired global impairment of intellect, memory and personality’. A more comprehensive definition has been suggested by McLean, namely, ‘an acquired decline in a range of cognitive abilities (memory, learning, orientation and attention) and intellectual skills (abstraction, judgement, Comprehension, language and calculation), accompanied by alterations in personality and behaviour which impair daily functioning, social skills and emotional control. There is no clouding of consciousness, and other psychiatric disorders are excluded.’
Dementia is not part of the normal aging process or psychosis. It usually has an insidious onset, with most people developing symptoms gradually over a period of years. It is progressive and irreversible. The progression of these diseases is largely unpredictable for each individual. How and what symptoms develop depend on what parts of the brain are affected by which illness, and the unique characteristics of each individual. Dementia has a life changing emotional, mental, physical and social impact on the affected person, their primary caregiver and their family influencing. Though the illness cannot be cured it can be treated. There are medications and therapies that can help manage the symptoms of the disease, making life easier for the patient and his/her family.
Different types of dementia:
Geriatric population is more affected by dementia of Alzheimer’s Type (DAT) or Alzheimer’s Disease (AD) 60-65 % and other related disease. Dementia is a condition, caused by many diseases. The most common cause is Alzheimer’s disease (AD). The second most common are Vascular Dementias, caused by small strokes that stop blood flow to parts of the brain. Other types of dementia caused by general medical conditions are Parkinson’s disease, Huntington’s disease, Pick’s Disease, Aids related disease or substance-induced dementia. Dementia differs from delirium, which is characterized by a state of sudden confusion; acute in nature, where as dementia is gradual ranging from mild, moderate to severe stage.
Dementia of Alzheimer’s Type (DAT):
Alzheimer’s disease is named after the German Psychiatrist, Alois Alzheimer, who in 1906 first described the changes caused by the condition. The diagnostic criteria for DAT as mentioned in DSM-IV-TR:
A. The development of multiple cognitive deficits manifested by both (1) memory impairment (impaired ability to learn new information or to recall previously learned information) (2) one (or more) of the following cognitive disturbances:
(a) aphasia (language disturbance)
(b) apraxia (impaired ability to carry out motor activities despite intact motor function)
(c) agnosia (failure to recognize or identify objects despite intact sensory function)
(d) disturbance in executive functioning (i.e., planning, organizing, sequencing, abstracting)
B. The cognitive deficits in Criteria A1 and A2 each cause significant impairment in social or occupational functioning and represent a significant decline from a previous level of functioning.
C. The course is characterized by gradual onset and continuing cognitive decline.
D. The cognitive deficits in Criteria A1 and A2 are not due to any of the following:
(1) other central nervous system conditions that cause progressive deficits in memory and cognition (e.g., cerebrovascular disease, Parkinson’s disease, Huntington’s disease, subdural hematoma, normal-pressure hydrocephalus, brain tumor)
(2) systemic conditions that are known to cause dementia (e.g., hypothyroidism, vitamin B or folic acid deficiency, niacin deficiency, hypercalcemia, neurosyphilis, HIV infection)
(3) substance-induced conditions
E. The deficits do not occur exclusively during the course of a delirium.
F. The disturbance is not better accounted for by another Axis I disorder (e.g., Major Depressive Episode, Schizophrenia).
With Early Onset: if onset is at age 65 years or below and With Late Onset: if onset is after age 65 years.
AD is a primary degenerative cerebral disease of unknown etiology, with characteristics neuropathological and neurochemical features. The relationship between cause and effect may be difficult to establish particularly with regard to neurotransmitter deficits and the characteristics of neuropathological changes that are seen in AD. The most important risk factor that has been identified with DAT is age based on epidemiological research.
Prevalence of Dementia
As of 2008, there are an estimated 30 million people with dementia worldwide. By 2050, it is projected that this figure will have increased to over 100 million. Much of the increase will be in developing countries. Already more than 60% of people with dementia live in developing countries, but by 2040 this will rise to 71%. The fastest growth in the elderly population is taking place in China, India, and their south Asian and western Pacific neighbours. (Ferri et al, 2005). Developing countries are also reaching the statistics of developed countries of increased life expectancy and stress related lifestyle, therefore, increasing risk of Dementia/AD.
The National policy on older persons confers the status of senior citizen to a person who has attained the age of 60 years (Ministry of Social Justice website). According to 2001 census an estimated 77 million people or 7.7 percent of the population are senior citizens in our country (Help Age India website). In Karnataka alone, the estimated cases of dementia are 77,320 (Dias & Patel, 2009). Dementia is a hidden problem in India (Shaji and Iype, 2006), may be due to lack of awareness among people and health professional to diagnose AD. A recent study in South India highlights the fact that prevalence of dementia is similar to other nations (USA). The data showed that 3.77 % above age 55 years, 4.86 % above 65 years had dementia. Greater age was associated with significantly higher prevalence while neither gender nor the number of years of formal education was associated with prevalence (Mathuranath et al, 2009). In rural areas, lifestyle, physical activity (farming) and environment difference could have contributed to the lower percentage of dementia. This is in particular reference to research done in Ballabgarh (New Delhi, India), there exist no case of dementia in this area, as studied in comparison with/to Pennsylvania community of elderly people, USA.
Many of our aged senior citizens live with their families. Hence any physiological and psychiatric changes affect these family members.
Need for Family Intervention
People with dementia need sustained care, it becomes important to provide services for patients with dementia also provide support and guidance to their caregivers. The burden of looking after patients with AD is immense. Caregivers and families become physically and emotionally exhausted. At this time families need support from the multidisciplinary team. They should be encouraged to learn about the principles of long term care in general and dementia care in particular.
A large scale study conducted by Levesque, Ducharme and Lachance, (1999) on caregivers and stresses experienced by people looking after demented patients are significantly greater than in caring for patients with other illness. Caregiver burden was also associated with increased mental health such as clinical depression and anxiety (Carradice et al, 2003; Connell, Janevie & Gallant, 2001, Paire, 2004). Caregivers who engage in social and recreational activities and interact with family and friends are less depressed than caregivers who are more socially isolated (as reported in Haley, 1997).
Factors contributing to the relationship between caregiver burden and distress are complex. These factors include care recipient impairment or the stage of illness, individual caregiver characteristics (age, gender, relationship with patient) and contextual factors such as social support. The most vital source of social support is family. Caregivers feel less burdened when family members provide emotional support and assistance related to caregiving tasks. However, pre-existing family conflicts intensified caregiver distress (Mitrani, 2000). In another study conducted by Mitrani, (2006) the results indicated that the role of family functioning contributed to caregiver distress largely and partially mediated the relationship between objective burden and distress. The events and circumstances that take place in the family during the course of dementia are believed to impact on how well caregivers cope with demands of caregiving (Cohen et al., 1998).
Family variables that are related to caregiver distress include marital conflict among caregiving daughters (Creasey et al., 1990), family conflict (Sample, 1992); problematic communication patterns (Speice et al., 1998). Three dimensions of conflict have been identified with caregiving families. Firstly, Family member’s perceptions of illness and strategies for care. Secondly, family members attitudes and behaviour towards the patient. Thirdly family members’ attitudes and behaviour towards the primary caregivers. Conflicts involving family members’ attitudes and actions toward the caregiver are associated with increased risk for depression among caregivers, whereas conflicts stemming from family members’ attitudes and behaviours toward the patient are most likely to result in anger (Miles & Huberman, 1984, Semple, 1992). The above mentioned literature stresses the need for family based intervention.
Stages of Dementia of Alzheimer’s Type (DAT)
It is important to know the stage or level of impairment of the dementia patient, its effects on the family, in order to design an effective family intervention program. As patients move through stages, family members’ roles and responsibility also changes. Caregivers go through various emotions from denial and anger to grief and guilt. The type of clinical intervention that is most appropriate and effective for a particular family should be determined by the types of problems and issues the family needs to be addressed. The below table demonstrates the changes in the person’s of DAT at different stages which is progressive in nature.
Early/Mild Stage: mild memory loss and deterioration of skills 1-5 years
Changes occurring in patient
Effect on family members
Forgets familiar names
Unable to name familiar objects
Unable to retain what is read
Unable to perform simple calculations
Decreased knowledge of current and recent events
Becomes careless in grooming habits
Becomes anxious and frustrated in demanding situations
Withdraws from challenging situations
Gets lost in familiar surroundings
Denial used as defense mechanism in coping with pain of relative’s diagnosis
False hope of improvement
Fear of future
Fear that they will also get dementia
Concern about the effect on their life
Conflict over care planning decisions
Family assessment to include: genogram, influence of pre-existing family patterns, cultural items, quality of relationships, family conflict, support system, and socioeconomic level.
Educate about disease process
Validation of feelings (e.g anger)
Refer to caregiver support group
Evaluate environment of dementia victim
Refer for information on legal and financial issues
Explore care options
Middle/Moderate Stage: Pronounced and severe decline of skills 5-15 years
Unable to recall addresses, phone numbers, names of family members
Disorientation to time or place
Has difficulty choosing the proper clothing to wear
Decreased ability to travel, handle finances, make decisions
Flattening of affect (facial expression)
Sleeping pattern affected
Behaviour changes- may become delusional, obsessive, easily agitated, depressed
Anger, resentment over caregiving responsibilities
Embarrassed by patients’ behaviour
Guilt over relinquishing caregiving responsibilities
Conflict over care planning decisions
Overwhelmed by caregiving responsibilities
Help to prioritize caregiving tasks
Assist family with feelings associated with caregiving and/or institutional placement
Encourage family members to continue contact with the person in an institutional setting, participating in their care plan
Problem-solve to alleviate conflict by resolving issues
Encourage participation in a caregiver support group
Be supportive to family members who are providing care
Increase family support network
Use crisis intervention strategies when necessary
Educate about behaviour management
Individual, marital or family therapy
Late/Severe stage: Complete loss of functioning and basic skills 3-5 years
Changes occurring in patient
Effect on family members
Unaware of recent events and experiences
Unaware of surroundings, the year, the season
Verbal abilities are lost
Incontinence of bowel and bladder
Loses basic psychomotor skills
Requires assistance in feeding, difficulty in swallowing
Unable to acknowledge recognition of family members, friends
Grief over the loss of the person they once knew
Conflict over care planning decisions
Guilt over this desire for the disease to progress to death
Support the family’s decisions on terminal care.
Problem-solve to alleviate conflict by resolving issues
Address the long term grief of caregivers and help them to prepare for their future without the patient
Provide case management services as needed, continually assessing the patient’s needs and the family’s coping ability
Give the family permission to let go
Encourage funeral arrangements
Initially due to lack of awareness among family members about DAT, they are unable to reason out why their family members’ behavior is different. Commonly these changes are attributed to normal ageing or are misunderstood as attention seeking behavior. Therefore, educating about the disease increases awareness among caregivers helping them plan for future. Middle stage is the most prolonged stage of illness resulting in behavioral disturbances of agitation, wondering etc., causing stress and strain on caregivers. At this stage caregivers require continuous support in sharing roles and responsibility as it is physically and emotionally taxing to attend to the demands of dementia patient. Hence, teaching family members about behavior management, crisis management, problem- solving and providing emotional support, by validating their feelings, will help caregivers to cope better. In severe stage patient is completely dependent on the caregiver. Caregiver strain and burden were exacerbated as dementia symptoms progressed (Wackerbarth & Johnson, 2002) especially behavioural problems associated with the dementia syndrome and incontinence (Shaji, 2002).
Consequently when choosing a suitable intervention model for dementia one has to keep in mind stages in dementia, context and circumstance, as care needs vary with stages of illness. Some of the Intervention models for caregivers are mentioned in the next session. In general, family intervention programs for caregiver’s of AD includes educating about dementia, providing support-family counseling, group & home support and skill training.
Family Intervention Model
Nonpharmacologic Management of Dementia:
The first line of treatment for an older person with dementia, especially one who has recently been diagnosed, is pharmacological, that is medication with cholinesterase inhibitors. Practice guidelines for Alzheimer’s disease and other dementias that were established by APA in 1997 maintain that nonpharmacological therapies for improving cognitive function are ineffective. NIA, 2004 states that although nonpharmacological therapies do not stop or reverse the disease, they may improve people’s cognitive functioning for a few months and, in some instances, a few years. The table below gives an overview of what is covered in this model.
ABC’s of dementia A – Activities of daily living (ADLs) B – Behavioral disturbances and management C – Cognitive disturbances and management
Diagnostic interaction D – Diagnostic interaction
Family Instruction E – Education
F – Family counseling
G – Group support – self help and support groups
H – Home support : home safety, home care
I – Institutional support: day care, respite care
Psychosocial issues J – Judgment issues: decision making, safety risk, driving
K – Knowledge issues: competency and need for conservator
L – Legal issues: living will, power of attorney
M – Money issues: financial status
Advanced dementia care N – Nursing home placement and care
O – Outbursts of disruptive behavior
P – Physical care
Q – Quality of life
R – Resuscitation
Special issues S – Special issues
Management strategies for dementia.
This model includes the process of diagnosis, addressing family needs, proving caregiver support and guidance with many psycho-social issues that arise. Since, patients are unable to give adequate feedback, most nonpharmacologic interventions and techniques are aimed at teaching family and caregivers how to manage the patient’s functional decline, behavioural disturbances and cognitive impairments.
It is a comprehensive model, providing guidelines for intervention useful for clinicians applicable to families and in dementia care institutions. Though it is a general model applicable across nations, one has to be aware of the nation’s law related to legal issues of will and power of attorney. In India, institutional support such as day care and respite care is just beginning. These services are established in urban areas, which are expensive and hence limiting the access for care. Regarding resuscitation, one has to be aware of families’ culture about their beliefs and how they respond to life threatening illness. This model focuses beyond the illness including strategies for care and guidelines to deal with other related issues such as finance, research, elderly abuse and autopsies, thus providing an overall management strategy for dementia.
Ecological Systems model:
This model is a generic framework that promotes the integration of the many theories and interventions is the ecological systems model (Averswald, 1968; Germain, 1973). The basic premise of ecological system theory is that individuals are involved in diverse systems, engaging in reciprocal interactions with other people and systems. Interventions according to this model are decided by assessing caregiver’s distress within the environment field and by studying the interactions between the subsystems. Ecological field include individual subsystems (biophysical, cognitive, emotional, behavioural, motivational); interpersonal systems (family, marital, relatives, social networks); larger systems (organisations, institutions, communities); and the physical environment (housing, neigborhood, climate) (Hepwroth & Larsen, 19993).
‘The ecological systems model provides a useful construct that suggests a person adapts best in an environment that is neither too demanding (high press) nor underestimating (low press) for his or her level of competence’ (Lawton & Nahemow,1973). Therefore, if caregiving responsibility is shared among family members according to their competence, it will reduce caregiver’s burden. It will also contribute towards healthy functioning of different subsystems in the ecological framework as caregivers can continue their regular work.
The impact of interactions between subsystems can result in both intensifying and alleviating caregivers stress. Families can benefit from larger systems like institutions for long term care of demented patients. When families experience economic constrain, they can approach other supportive social networks like, friends, neighbours and relatives. Research supports that this framework is effective in individual and group interventions in helping family members cope with the stresses of caregiving (Toseland, Rossiter, Peak & Smith, 1990).
Family systems Model:
‘The family systems model is based on the premise that members of family groups influence and are influenced by all other members. Each family is a unique system, with its own set of rules that specify power structure, roles, communication techniques, and problem solving’ (Bowen, 1971; Haley, 1971; Minuchin, 1974; Kerr, 1981). According to this model, changes in the health and functioning of dementia person influence the entire family unit. Each family member’s reaction to dementia patient after diagnosis can vary. This will influence the roles and responsibility that family members take up. An understanding of the family’s structure and dynamics is necessary both for assessment and interventions. ‘Interventions can be focused on cognitive, emotional, and/or behavioural levels of functioning in families’ (Wright & Bell, 1981), which can be used alone or simultaneously.
This model is extremely useful to family members as cognitive interventions include educating them about the illness, its effects on family members and suggest ways to respond to these effects. With emotional intervention, family members may feel relieved, when their emotions of guilt, anger, sadness is validated and explained in connection to the progress of the illness resulting in increased stress. They are also encouraged to continue their daily routine by assigning caregiving responsibilities to all family members. Teaching new adaptive skills will reduce disturbance in family because of illness. Family systems model is a useful model for treating caregivers of dementia, as it addresses family members concerns about what is happening to their family member (dementia patient) and why family members are feeling and reacting in a certain way.
Family Mediation is a family- oriented, problem-solving, task completion model that was originally used as an intervention in child custody and divorce situations, child-parent conflicts, and family disputes (Parsons & Cox, 1989). In this model, the mediator is a neutral person negotiating between family members to resolve conflicts. These conflicts could be related to living arrangements of dementia patient, caregiving responsibilities, financial burden etc., which could be because of interaction between subsystems. Therefore, family mediation model when applied with cognitive, emotional and behavioural interventions of family system model can be more effective.
The role of the mediator can be highly challenging because decisions involving several participants are not unanimous, family members may deny the existence of a problem or be reluctant to participate in an open discussion of conflict or could have their own vested interest in providing care and may not be open to negotiation. A study was conducted on the vulnerability and support for older persons in Southern India (Kerala, Tamil Nadu and Karnataka) with sample of 7500 households. The results showed that vulnerability and support in old age are not related to situations of modernization and need (only widowhood, and not health status) but are more closely related to asset ownership (given importance in the power/bargaining model). Mediation can prove to be effective when family members are willing to express their feelings and needs openly (Chandler, 1985). The end result of an effective mediation is a win-win situation between parties, which is a mutually acceptable solution.
Firstly, it is important for caregivers to take care of their own physical and emotional health in order to provide care to their loved ones. In our society more and more responsibility is placed on the family to provide care. Some cultures tend to have extended and nuclear families, who can offer support to the caregiver. Some cultures also view care-giving as an expected family function that add pressure and stress on the family. Since the relationship in Indian families is mostly emotional in nature, there are unspoken caring commitments expected from the primary caregivers. In designing intervention programs, it is important to understand the patients’ needs, but it is also important to understand the families (caregivers) needs.
Secondly, family intervention in India should focus on psychoeducation as family view signs and symptoms of dementia as part of normal ageing. This will increase awareness among family members about the need for care of dementia patients, and also get them involved in sharing the burden of caregiving. Families and primary caregivers can benefit from community based intervention. Technology based intervention programs can also prove to be promising in providing low-cost, convenient and effective approach.
Lastly, since the prevalence of dementia in India is increasing, need for intervention is also rising. Institutions providing care to dementia patients must also be developed. The first and only dementia care centre was started by Alzheimer’s and Related Disorders Society of India in 2005 at Guruvayoor with facilities for 10 residents. Such organisations should be recognised and encouraged by society. Consequently, the well being of primary caregiver can be increased by providing continuous emotional support to family members in the community.