Special Clinics for Dementia (Memory Clinics) in India

Introduction

For someone exhibiting dementia symptoms, getting a proper assessment and diagnosis is the starting point for suitable treatment and support. Diagnosis enables the family to know the underlying medical condition. It enables getting appropriate treatment and support. It may be possible to improve reversible and treatable conditions with appropriate interventions. Information and counseling can help the persons with dementia and their family to accept the situation and plan better for the coming years.

Currently, most families living with dementia in India do not get a proper diagnosis or treatment or support. This is a major area to address. One way to reduce this gap is to have special clinics that focus on dementia diagnosis, treatment, and support. This page discusses what concerned persons need to consider at if they want to help families with dementia through such clinics.

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What is a special clinic for dementia (typically called ‘memory clinic’)

A special clinic for dementia is a specific service set up to assess, diagnose and treat persons who have dementia, provide relevant information to the family, and to counsel and support them over the years as the dementia progresses, using a team of specialists.

“Memory clinic” is the most common term used for a special dementia clinic. Also, the functions typically performed by a memory clinic may be part of a larger special clinic that helps elders or focuses on mental health and well-being. Often, such clinics are run in hospitals by departments like neurology, psychiatry, and geriatrics.
Memory clinics are also found as part of research centers and dementia support organizations.

On this page, we use the term “memory clinic”.

A memory clinic offers a multi-disciplinary approach to persons with dementia and their families, using a team of specialists. These specialists are experienced in dementia. Their combined skills cover multiple disciplines that are needed to assess and support dementia diagnosis, treatment, and care.

The clinic:

  • Assesses the person to determine the underlying causes of the symptoms, using the standard diagnostic process such as gathering case history, assessing the cognitive status and its impact on the person, doing various tests and investigations (such as blood tests, scans) , etc.
  • Arrives at a diagnosis and a treatment pathway.
  • Conveys the diagnosis in an appropriate way (may require a number of sessions).
  • Counsels and provides information to help the person and family understand the impact of the condition, available treatment, prognosis, etc.
  • Provides ongoing treatment, re-assessment of status, and counselling through the course of dementia progression.
  • Uses follow-up systems to continue support.
  • Does all these using a combination of suitable specialists (doctors, nurses, psychologists, social workers, etc.) and by spending enough time with the family.

A memory clinic uses a team-based approach for diagnosis and support. It should not be confused with an OPD consultation with a specialist. As explained in this quote from available guidelines:

Assessment of people with dementia requires much more than a consultation which happens in an outpatient clinic. Memory clinics are not ordinary outpatient clinics where a neurologist or a psychiatrist manages patients with dementia. Memory clinics are much more than that. Memory Clinic consists of a multidisciplinary team which assess and manage patients with dementia on a long term basis.[1]

Also note that a memory clinic is not just for memory problems. As explained in available guidelines for memory clinics:

What are the common features associated with dementia, a Memory Clinic has to address?

Cognitive symptoms, Difficulties with ADL (Activities of Daily Living), Behavioural problems, Psychological symptoms, Psychiatric symptoms, Co existing physical problems, Co existing mental health problems, Caregiver issues, Social and financial problems.[1]

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What a memory clinic requires, and how to contribute

Here is a suggested list of the key requirements for setting up and running a clinic (not intended to be a complete list)

  • Suitable place to hold the clinic (Necessary)
  • Specialists for the multi-disciplinary team (assessment, treatment, counseling) (Necessary)
  • Staff for other work (administrative work, follow-ups, records, etc.) (Necessary)
  • Procedures to use for the clinic functioning, which are suitable for the target profile (such as diagnosis process which may include using culturally appropriate cognitive testing, treatment protocol, procedures for counseling the person and family, process to train caregivers, etc.) (Necessary)
  • Information booklets, manuals, CDs, etc., that can be handed out to educate and train the family. (Necessary)
  • Funds for the above (rent, fees, running costs) (Necessary)
  • Community outreach (publicity, awareness, communication) to spread word about the clinic and to encourage families to come to the clinic. Maybe associating the clinic with hospitals or dementia organizations, or becoming part of existing/ related specialty clinics, or even having mobile clinics (highly desirable)
  • Suitable information on/ tie-ups with other related and authentic services (for investigation, more detailed/ ongoing counseling, services that can be useful to the family) (highly desirable)
  • Suitable systems for streamlining record capture and follow-ups (highly desirable)
  • Systems for follow-up using technology/ online meetings where bringing the person repeatedly to the clinic is not feasible (desirable)
  • Systems for supplementing explanations of dementia and care skills to families using videos, slide-shows, other technology (desirable)
  • Suitable systems to gather data for analysis/ research to better understand prevalence and to assess the effectiveness of the clinic (nice to have; may also be useful to get funding)

If you are concerned about dementia and want to support families living with dementia, then helping to set up or run a memory clinic is a very good option to consider. You can establish a memory clinic, or become part of a team setting up a clinic, or help in multiple ways to make a clinic effective. Of particular help would be using contacts/ advocacy so as to establish such clinics as part of local hospitals.

(A general discussion on how potential contributors can select projects and contribute can be seen at: Action Areas to Contribute to, and Possible Approaches )

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Additional note for some India-specific aspects

  • Free or subsidized memory clinics for the under-privileged would be particularly helpful, as would free or subsidized medicine.
  • The naming, positioning and publicity of the clinic should take into account the current pathetic awareness around dementia in India, and the stigma around a problem (the condition is often translated to local languages using stigmatizing terms). People may assume that a memory clinic is only for memory problems; they may not visit it for cognitive problems if there is no predominant memory problem (as in FTD or some other dementia). Or they may hesitate because of the stigma.
  • Keeping families engaged enough to come for repeated visits is a major challenge in India. Special care needs to be taken while conveying of the diagnosis initially as many families may not come for the next visit. They may go back to the “it is just old age” paradigm or believe prevalent myths and misinformation and assume the problem will get solved using things like will power, faith healing, natural remedies, and alternate systems. Engaging and convincing the family may require follow-up calls at least till the family understands and begins accepting the diagnosis. Information booklets and other material may also help.
  • The clinic may need to design and implement several processes it needs. It may have to prepare or procure material required for its functioning, keeping in mind the societal environment and the target audience. There may not be enough available national or regional material to use directly. Examples of what may be needed are (list is indicative, not exhaustive):
    • Modified instruments and procedures for checking cognitive status (like tests in local languages, tests for illiterate persons, etc.)
    • Treatment pathway, communication conventions, counselling approach, that take into account the need for overcoming stigma and myths and for reinforcing the diagnosis, possibly through repeated sessions
    • Awareness material and caregiver training modules suitable for the literacy and language proficiency of the target audience. May need material in local languages, and also audio and video material. Some material should be usable to convince friends and neighbors about the diagnosis.
  • More outreach efforts may be needed. As families may not think of coming to the clinic, you may need to actively reach out to families that may need help. For example
    • Staying connected with other medical facilities which the family may be in touch with, such as GPs, cardiology department of a hospital (for stroke cases), etc. Also, see if you can screen patients already in inpatient-wards for cognitive problems.
    • Active publicity and myth-busting in the localities may be needed to make people aware that the clinic can be useful to them.
    • Use of the existing patient base and inpatient wards of hospitals to identify persons who may benefit from memory clinics

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Resources

A comprehensive India-specific memory clinic guidelines document (made available by ARDSI) is available online: ARDSI Guidelines for Establishing Memory Clinics. This document discusses the specifics of establishing a memory clinic in India. The author of the guidelines, Dr. CT Sudhir Kumar, may be contacted at sudhirkumarct@yahoo.com.

A very detailed document with guidelines for memory clinics is available from UK: MEMORY ASSESSMENT SERVICE MODEL, NHS UK. Pdf version

With special thanks to Dr. CT Sudhir Kumar for his suggestions on an early draft of this page.

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Notes :

[1]: Quote from ARDSI Guidelines for Establishing Memory Clinics.


Pages in this section:

Resources: If you want to help caregivers/ spread dementia awareness