Ageing brings with it changes in number of domains, including attitudes, health, self-image, relationships, status, generational changes, sexual functioning and an awareness of time and mortality. These general themes all appears regularly in clinical work with older people as they come to terms with the realities of retirement or illness. (Wattis and Curran, 2006)
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). An estimated 77 million people or 7.7 percent of the population are senior citizens (Help Age India website) Many of our aged senior citizens live with their families. Hence any physiological and psychiatric changes affect these family members. (Handbook of Psychiatric Social Work,2007)
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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 usually has an insidious onset, with most people developing symptoms gradually over a period of years. 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 physical, emotional and mental impacted on the affected person and their primary caregiver and family. Dementia is a neuropsychiatric condition in elderly, disabling illness of late life, which is a hidden problem in India, demanding immediate attention from professionals (Shaji & Iype, 2006).
Different type of dementia:
Some types of dementia are irreversible and progressive. This is not true for all types of dementia, especially if detected early.
Types of dementia include:
Dementia of the Alzheimer’s Type
Approximately 50 percent of all cases of dementia are caused by Alzheimer’s disease.
Vascular dementia is cause by small strokes that stop blood flow to parts of the brain.
Dementia Due to Other General Medical Conditions
Medical conditions that can cause dementia include HIV, head trauma, Parkinson’s disease, Huntington’s disease, Pick’s disease, Creutzfeldt-Jakob disease, metabolic disorders, and hypoglycemia.
Substance-Induced Persisting Dementia
The use of a substance such as alcohol or the sudden withdrawal from a substance can cause dementia. This is diagnosed only if the symptoms last beyond normal withdrawal time for the substance.
Dementia Not Otherwise Specified
This is the category for dementia that doesn’t fit in an above category.
Dementia differs from delirium, which is characterized by a state of sudden confusion. Dementia is not part of the normal aging process nor is it mental retardation or psychosis. There are medications and therapies that can help manage the symptoms of the disease, making life easier for the patient and his/her family.
Dementia of Alzheimer’s Type (DAT):
Alzheimer’s disease is the most common form of dementia. 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).
Code based on presence or absence of a clinically significant behavioral disturbance:
294.10 Without Behavioral Disturbance: if the cognitive disturbance is not accompanied by any clinically significant behavioral disturbance.
294.11 With Behavioral Disturbance: if the cognitive disturbance is accompanied by a clinically significant behavioral disturbance. (e.g., wandering, agitation)
With Early Onset: if onset is at age 65 years or below
With Late Onset: if onset is after age 65 years
ICD-10 diagnostic criteria for dementia:
The primary requirement for the diagnosis is evidence of a decline in both and thinking which is sufficient to impair personal activities of daily living. The impairment of memory typically affects the registration, storage and retrieval of new information, but previously learned and familiar information may also be lost, particularly in later stage. Dementia is more than impaired memory. There is also impairment of thinking and of reasoning capacity, and a reduction in the flow of ideas. The processing of information is impaired, in that the individual finds it increasingly difficult to attend to more than one stimulus at a time. (e.g. taking part in a conversation with several people), and to shift the focus of attention from one topic to another. If dementia is the sole diagnosis, evidence of clear consciousness is required. However, a double diagnosis of delirium superimposed on dementia is common. The above symptoms and impairments should have been evident for at least six months for a confident clinical diagnosis of dementia to be made.
Alzheimer’s disease (F00)
In ICD-10, Alzeheimer’s disease (AD) is divided into ‘Dementia in AD with early onset’ (F00.0) and ‘Dementia in AD with late onset’ (F00.1). These categories include the definition of dementia discussed above. For ‘Dementia in AD with late onset’, onset is after the age 65years. AD has an insidious onset with a gradual decline in the mental stage, Memory difficulties, especially with regard to new memories, are usually the first symptoms to be noticed. Memory problems may be attributed to ‘old age’ or ‘absent-mindedness’. The onset is so gradual that even a close relative living with the patient the early stages, previous personality may strongly influence the presentation. Patients with a tendency to be suspicious of others or to deny their own limitations may upset carers by accusing them of stealing misplaced items. Others may react to these early changes by becoming extremely dependent on relatives, especially if family patterns of behaviour encourage this. Mood disturbance is not a diagnostic feature of AD. It may also be common in more advanced AD. Here it may not be reported by the patient, but may be inferred from behavioural changes and response to treatment with antidepressants. The patient usually lacks insight, and as the disease progress their behaviour may become more erratic. Disorientation with regard to time, place and person will also increase, usually in that order. The combination of disorientation in time and place and topographical disorientation may cause the patient to wander, resulting in considerable distress for the family, risk to the patient and the involvement of neighbours, other individuals and the police, who may have to bring the patient home. Patients may get up in the early hours believing that it is time to go to work or get the children ready for school. Hallucinations (usually visual) are fairly common, but are not usually evident except through the description of careers (e.g ‘he spends a lot of time picking up imaginary food from thr floor’). As the disease progress, the patient will become unable t recognise their relatives, who often finds this distressing. The patient may then become distressed, as they may believe that their spouse or son or daughter in a intruder. In addition, the patient may fail to recognise him or herself , and this can also cause considerable distress. Carers often find that removing mirrors solves the problem. Other difficulties with moderate to severe impairment include apraxia, which presents with difficulties in dressing and washing and other tasks involving visuo-spatial skills. Dysphasia (inability to express oneself in words or to understand words) can lead to severe frustration when combined with all of the other impairments and confusion. Incontinence (both urinary and faecal) usually develops late in the disease and for many carers is the ‘final straw’. Eventually the point is reached when the patient is unable to or anything from him- or herself including the following: dressing, personal hygiene, domestic tasks, toileting and feeding.
There are characteristic changes in the brain: a marked reduction in the population of neurons, particularly in the hippocampus, substantia innominata, locus ceruleus and temporopareital frontal lobe cortex; appearance of neurofibrillary tangles made of paired helical filaments; neuritic (argentophil) plaques, which consist largely of amyloid and show a definite progression in their development (although plaques without amyloid are known to exist); and granulovacular bodies. Neurochemical changes have also been found, including marked reduction in the enzyme choline acetyltransfearse, in acetylcholinse itself, and in other neurotransmitters and neuromodulators.
Causes of AD
AD is a primary degenerative cerebral disease of unknown etiology, with characteristics neuropathological and neurochemical features. The precise aetiology of AD is poorly understood. However, it is important because such an understanding may have implications for both prevention and treatment. 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. On the basis of epidemiological research, the most important risk factors for AD are old age and a family history of dementia and Down’s syndrome.
Alzheimer’s and the Brain
Alzheimer’s disease leads to nerve cell death and tissue loss throughout the brain. As the disease progresses, brain tissue shrinks and the ventricles (chambers within the brain that contain cerebrospinal fluid) become larger. The damage disrupts communication between brain cells, crippling memory, speech, and comprehension.
There is no cure for Alzheimer’s disease, and no known way to slow the nerve damage within the brain. But there are a variety of medications that appear to help maintain mental function and slow the disease progression. If these treatments are given during the early stages of Alzheimer’s, your loved one may be able to remain independent and carry out daily tasks for a longer period of time.
Prevalence of Dementia:
Worldwide, there is a new case of dementia every seven seconds. 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)
Stages of Dementia/AD
Knowing a person’s disease stage helps health professionals to determine the treatment approach and aids communication between health providers and caregivers. Sometimes the stage is simply referred to as “early stage”, “middle stage” or “late-stage” dementia, but often a more exact stage is assigned, based on a person’s symptoms. Geriatric population is more affected by dementia of Alzheimer’s Type (DAT) or Alzheimer’s Disease (AD) 60-65 % and other related disease. Therefore, 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 stage to best help both the elderly people and their families.
The below table demonstrates the changes in persons with Alzheimer’s disease and related disorders that usually occur during the progression of the illnesses. As patients move through stages, family issues are also changing. 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 address.
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
Denies memory problems and inability to perform tasks
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
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
Effects of AD
As 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, and carers and families become physically and emotionally exhausted and socially more taxing. At this time families need support from the multidisciplinary team. For the better quality of life of both AD patients and caregivers, there is need for research and intervention models specific to individual’s (family’s) culture. Most of the time the caregivers are family members, they are encouraged to learn about the principles of long term care in general and dementia care in particular.
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In India, caregivers have their own strategies for care giving suitable to the family member of dementia. What is lacking is the knowledge of AD, therefore educating them is important, which will change their perception and attitude toward the family member (support with research). 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. Developing countries are also reaching the statistics of developed countries of increased life expectancy and stress related lifestyle, therefore, increasing risk of Dementia/AD.
Some of the Intervention programs for caregivers are mentioned in the next session. This includes different models of intervention based on theory and research. Details of family intervention programs for caregiver’s of AD includes Educating about dementia, providing support-family counseling, group & home support ,skill training. number of sessions, time period, and objective, content, success rate/effectiveness of the session/model.
Caregivers of AD
Role of caregivers
Challenges faced by caregivers
In our society more and more responsibility is placed on the family to provide care. The family caregiver is that significant person in the family, who looks after the basic needs of the patient throughout the day. The care for the caregiver is of immense importance as this population suffers more psychological effect than the patient.
With the onset of a disability, the family is forced to take on new roles and greater responsibility. This causes high levels of stress in an already stressful situation. Caregivers are sometimes forced to give up their own needs in order to care for a family member. The caring for someone and constantly giving up ones own personal interests can affect the caregiver both physically and emotionally which, in turn affects the patient. The caregivers need to be aware of their own feelings, judgements, and different ways of reacting to the patients’ behaviour. They must also take care of their own physical and emotional health in order to provide care to their loved one.
Ethnicity and culture issues also play a greater role in care giving. In society today, we have many different types of families. Some cultures tend to have extended and blended families, which can offer more support to the caregiver. Some cultures also view care-giving as an expected family function that can put added pressure and stress on the family. It is important for treatment team to understand the patients’ needs, but it is also important that they understand the families (caregivers) needs.
Stress and caregiver burden:
The negative phenomena associated with caring for victims of illness and injury is defined as caregiver burden. Caregiver burden may be further categorised into objective burden and subjective burden. Objective burden included changes in the patient’s personality and behaviour which are seen by the caregiver as well as financial strain, changes in the daily routine, changes in living conditions, and changes in social activities. Subjective burden is defined as the caregiver’s negative reaction in response to the presence of objective burden.
A study conducted by Mitrani et al (2006) on the role of Family Functioning in the Stress Process of Dementia Caregivers: A Structural Family Framework. It was conducted on One hundred eighty-one family caregivers from the Miami site of the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) project participated in this study. They assessed socio demographics, burden, depression, anxiety, and perceived health for each caregiver. The results of the study indicated that family functioning significantly contributed to distress in the overall sample and partially mediated the relationship between objective burden and distress. The implication of the study is that Family structural functioning is one contributor to the caregiver stress process. This suggests that interventions targeting structural family problems may reduce caregiver distress.
The disease follows a predictable irreversible progression that lasts from between three to twenty years.
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.
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). Family treatment from a systems framework begins with an assessment of family organization and functions. An understanding of the family’s structure and dynamics is necessary for making decisions regarding change strategies.
From a family systems perspectives, the changes in health and functional status that are associated with dementia affect all members of the family unit. Although a primary caregiver usually assumes the daily care of the dementia patient, all family members experience some changes in roles, relationships, and goals. In some cases, the burden on the family can become excessive, jeopardizing the family’s physical, emotional, and social stability (Niederehe & Fruge, 1984)
Interventions based on the family systems model can be focused on cognitive, emotional, and/or behavioural levels of functioning in families (Wright & Bell, 1981). These interventions are directed toward change within the structure of the family, altering the postions of family members and resulting in individual changes as well. The following types of interventions have been found to be effective with families of dementia patients and can be used alone or simultaneously.
Directed at the cognitive level of family functioning, these interventions provide new information or a new perspective on a problem. They can include educating the family about the dementing illness and discussing the potential effects of the disease on family members. The next step is to suggest ways in which the family can respond to these effects and to provide information about community resources. It may be extremely painful for the family of a dementing patient to make the decision to place her in a nursing home. The clinician can provide an objective viewpoint, alleviating some of the family’s guilt in making the final decision.
These interventions validate a family’s emotional responses and often affect feelings that may be blocking their efforts at problem solving. Validation of family members’ emotions, such as sadness, anger, and guilt, can help them understand the connection between the dementing illness and their stress. In the validation process, it is important to emphasize that the whole family is affected by the illness.
Aimed at the behavioural level of functioning, these interventions can assist family members in modifying behaviours that cause problems in their interactions. This type of intervention attempts to change such behaviour by teaching new adaptive skills. Families area also encouraged not to make sudden and major adjustments in their daily routines following a diagnosis of dementia. Family members do not all react in the same way to this illness; whereas some tend to exist in a state of denial throughout the initial stages and fail to recognize the real needs of the patient, others overcompensate and encourage dependence by the patient. To avoid a continuous state of family disruption, it may be necessary to assign specific behavioural tasks to family members. At the same time, it is important to emphasize that family members should try to continue their regular activities and maintain their accustomed role responsibilities for as long as possible.
Before intervening in a family system that is dealing with a dementing illness, clinicians need to understand the family’s perception of the illness. The clinicans’s objectives is to help the family to adjust t it, not necessary to accept it.
Tracy was a 30 year old teacher who sought help for her recent anxiety attacks. During the initial interview with the social worker, she focused on her mother, who was caring for Tracy’s grandfather, an Alzheimer’s patient. Tracy and her mother had always had a good relationship, but Tracy had now become focused on how her mother was coping with her grandfather’s illness and was making recommendations on how she could get some respite from her caregiving responsibilities. Her mother refused to consider Tracy’s recommendations.
Originally sympathematic to her mother’s caregiving situation, Tracy was now frustrated and angry because she thought her mother was neglecting herself and other family members while caring for grandfather. Tracy reacted to her grandfather’s illness by focusing intensely on her mother’s cargiving responsibilities and taking on her mother’s problem as her own. This focus on her mother allowed her to avoid dealing directly with her feelings about her grandfather’s progressive illness and eventual death.
Tracy’s mother reacted to her father’s illness by overcompensating and enmeshing herself in the role of caregiver. Although she often complained that caring for her father was exhausting and left her with little time and energy for herself or other famly members, she refused to consider assistance from her family or community services.
Advise Tracy to stop giving recommendations to her mother, but to continue to be supportive.
Encourage Tracy to discuss her feelings about her grandfather’s illness and any perceived expectation that she would assume the same caregiving responsibility for her mother in the future.
Open communication between Tracy and her mother (and other family members, if possible) to share contents about the patient’s illness.
Suggest meeting with Tracy’s mother. Encourage her to set time aside for herself and her family, providing support and information on resources and care options. Giver her permission to acknowledge the negative as well as positive feelings of caregiving.
Open lines of communication between Tracy, her mother, and other family members.
Acknowledge Tracy’s and her mother’s feelings associated with the patient’s illness.
Remove Tracy’s self-imposed responsibility for solving her mother’s caregiving problems.
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). A model that empowers mediation is an effective strategy for many of the caregiving problems that occur during the course of a dementing illness.
The mediator role is based on conflict theory. Three dimensions of conflict have been identified with these caregiving families:
a. Family member’s perceptions of illness and strategies for care.
b. Their attitudes and behaviour toward the patient; and
c. Their attitudes and behaviour toward the primary caregivers (Miles & Huberman, 1984, Semple, 1992).
Conflict often results from interaction between systems such as individuals, families, organizations, and communities, and may grow out of differences in values and power that make it difficult for the parties involved to define ways to agree or disagree. The role of the mediator is to move the conflict from the emotional and values level to a more objective level that provides the opportunity for negotiation.
Families involved in the care of a person with dementia are faced with many options for difficult decisions, such as relocation, assignment of caregiving responsibilities, home health care, assisted living arrangements, and nursing home placements. Participants in the decision-making process may include dementia patient’s spouse, children, friends, neighbours and professional care-givers. Decisions involving several participants are usually not unanimous, with conflict resulting throughout the process from feelings of guilt, grief connected with the progression of the deme
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