One Day Sensitization program for the Family care giver of the Demented Elderly

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Alzheimer's and Related Disorders Society of India (ARDSI) – Hyderabad Deccan and Memory Clinic, NIMS organized "One Day Sensitization program for the Family Care Giver of the Demented Elderly " on February 26,2011 Saturday, 9:30 AM –5PM, at Conference Hall, 1st floor, Millennium Block,NIMS.

The session, attended by 35, commenced with a warm welcome from Dr.Suvarna Alladi, Additional Professor, Dept of Neurology NIMS and President, ARDSI Hyd Deccan who wished all the participants and explained the aim of this program which is to sensitize the community and to take best care of Demented elderly.

What is Dementia: She emphasized the need for training family members apart from diagnosis and prescription, as the family plays a vital role in dealing with the Disease. The topics covered in her presentation were - Dementia, Symptoms and types of Dementia, different stages of Dementia, effects and prevalence rate of Dementia.

Communication: Ms. Santhoshi Kumari, Psychologist, Memory Clinic, NIMS took the session on communicating with people with dementia. She explained
differences between verbal and non verbal communication. Common communication problems faced included naming, recall, slowness in speech e.t.c. People with dementia have an insight in to the problems they face and to avoid affecting their sense of self-worth and self-respect, we should provide them the environment and support to communicate effectively .

Some of the tips for better communication included use simple and short sentences, providing choices, taking consent from patient, informing the patient prior to any activity, refrain from talking in front of the patient about their condition , avoiding arguments and confrontation, avoiding baby-talk while encouraging them for any task. She summarized the session saying that we should show courtesy and concern to the patients and actively engage in supportive communication.

Ms. Sonal Chitnis, Speech pathologist, Yashoda Hospital explained about the aim of speech therapy in Dementia.

Her talk highlighted the following. Speech therapy in Dementia aims not only at SPEECH but also at Verbal and nonverbal Communication Facilitation, safe Swallowing , Linguistic and extra-linguistic skills, cognition of persons with dementia,therapy with both individual and care giver through direct and indirect intervention mode. Direct intervention can be one to one or in a group therapy where motor, sensory, social, cognitive skills based activities can be carried out to restore and facilitate Speech, language, communication and Swallowing in general, indirect intervention includes counseling reg environment modification, training caregiver, giving memory aids, communication board, signs, Augmentative alternative communication devices.

She also explained about oral mortor therapy and activities on symptoms based. Precautions while feeding to be monitored are avoid fast feeding, difficult to chew, sticky –spicy and too cold/ hot eatables and beverages and explained the chin tuck method to avoid aspiration pneumonia and swallowing impairment in the patients.

Understanding Behaviour: Dr K Chandrasekhar (Vice- President, ARDSI Hyderabad Deccan and Director, Division of Neuropsychiatry and Geriatric Psychiatry at Asha Hospitals, Hyderabad), gave a presentation on Understanding Behavior of Dementia patient.

He said that persons with dementia typically lose logical thinking and also lose track of the conversation after a while. He explained differences between normal forgetfulness and told that the symptoms of Dementia do not happen overnight but it is a progression and sequence of the disorder.

There is a continuous change in behavior, where the patient will lose reasoning and face lots of stress and may withdraw himself from others. He explained the reasons for sleep disturbance , wandering and provided practical solutions to deal with those problems

A question and answer session followed.

Geriatric problems: Dr. Rukmini Mridula, Assistant professor, Dept. of Neurology NIMS gave a presentation on Common Geriatric Problems. The normal problems with elderly people are decrease in retention of new information, decrease in blood pumping capacity to heart, urinary bladder disturbances , decrease in muscle strength etc. Common disorders in elderly people are Hypertension and Diabetics. Neurological disorders are Brain attack, Slowness in activities, Confusion state, Metabolic abnormalities etc.

Sharing of carer experience: Mr. Guru Raj, family caregiver narrated his experience with his mother who was affected with dementia and have been taken care of by the family for 10 years. He explained that special care needs to be taken with respect to basic hygiene and toileting. To reduce caregiver stress, it is essential to have an alternate caregiver who can share the responsibilities. It is important to spend quality time with patient and include outings in the daily/weeklyschedule such as visits to the park, temple etc. Patients shouldn't be coerced into doing anything as this will increase their frustration. Rather a loving and supportive environment should be provided to persuade them. He concluded by asking carers to not focus on the tragic nature of the disease but to develop the courage to accept the circumstances and work towards improving the quality of life.

Physiotherapy: Dr. Naveen, Lecturer, Dept of Physiotherapy NIMS gave a presentation on Physiotherapy for Dementia Patients. His talk included the role of a physiotherapist in dementia care, interventions appropriate for the different stages, postural deviations and corrective exercises, gait training, toileting, bowel and bladder training. He showed pictures of different assistive devices available for Dementia Patients.

Caregiver experience:
Ms. Shobha Caregiver, shared her experience as a caregiver whose husband, former Chief Engineer, is in the advanced stage of Alzheimer's. Earlier she had no awareness about the Disease but after coming to know about the Disease, she worked towards providing a better care to her husband. She explained about the behavior problems of the patients such as halluncinations and inability to recognize relatives, blaming others. She emphasized the importance of the support to be given to them in the best way possible.

Ms. Safiya Fathima, Psychologist and coordinator, ARDSI Hyd Deccan took a session on the importance of activities for Dementia patients and said that the family is the best source to determine the activties appropriate for the patient. Activities need to account for preferences of the patient and stage of dementia. She highlighted the point saying that Activities are as important as medicines. Activities should suit the person's preferences, their level of Dementia and also their interest and abilities and should give them a sense of happiness and confidence. She shared her experience with the patients at the Rehabilitation centre [run by ARDSI Hyd Deccan twice week ] using different pictures and videos of the patients.

Functional Rehabilitation of Persons with Dementia:
Ms. Rukhsana Ansari, Secretary of ARDSI Hyd Deccan gave a presentation on Functional Rehabilitation for Patients with dementia.She gave practical tips on how to manage different problems faced by the Dementia patients. Functional decline in patients creates Helplessness, frustration, dependency on others, loss of role in their families etc. The goal of functional rehab is to retain functional abilities and allow for a normal life as much as possible. One needs to recognize the process of reverse ontogeny that starts of by loss of declarative memory, followed by loss of procedural memory and finally primitive skills. Instrumental Activities of Daily Living (IADLSs) are affected first followed by Basic ADLS and with this knowledge, carers can setup milestones to help patients maximize their functional potential.

Caregivers should think from the perspective of the patient and extend their support to lead normal life as much as possible without effecting their routine and day to day activities. Especially care should be more extended in the basic but very important activities of the life i.e., Feeding, dressing and Toiletries. Special feeding devices, comfort dressing and toiletries, and walking devices need to be arranged for rehabilitation purpose.

Environmental modifications, assistive devices, can be used to reduce incontinence, improve feeding, walking etc. Simple changes such as proper night lighting, labelling, removing clutter, cueing, maintaining an activity schedule, timed voiding help in making significant improvements in patient's daily life.

The programme concluded with felicitation of the following 5 volunteers who have been helping in the Rehabilitation centre and Home-visits.

1) Dr Prakash
2) Mr Pandu Ranga Rao
3) Ms Vijaya Kumari
4) Mr Anil
5) Ms Helen